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A QUARTERLY NEWSLETTER ABOUT VISUAL IMPAIRMENTS AND DEAFBLINDNESS FOR FAMILIES AND PROFESSIONALS 
A collaborative effort of the Texas School for the Blind and Visually Impaired and Texas Commission for the Blind 



Fall 1998 



Volume 3, No. 4 



Table of Contents 

FAMILY 

Food, Food, Food 2 

Good Days, So-So Days, and Bad Days 2 

For Your Information 3 

Student's Will to Survive With Visual Impairments Brightens School Halls 6 

Welcome to Our- Kids 7 

About the Sibling Support Project g 

PROGRAMMING 

Orientation and Mobility Training: The Way to Go 10 

O & M Around the World 14 

Hand-Over-Hand Guidance: What Lesson Do We Teach? 15 

Read Any Good Books Lately? 17 

SYNDROMES/CONDITIONS 

Cerebral Palsy and Children With Vision and Hearing Loss 20 

Cortical Visual Impairment Pediatric Visual Diagnosis Fact Sheet™ 24 

June Usher Retreat a Success 28 

Cornelia de Lange Syndrome Conference 28 

Leber's Congenital Amaurosis Newsletter Update 29 

NEWS &. VIEWS 

Coming Soon To a Neighborhood Near You 30 

TCB's Corner 31 

Superintendent's Corner. 31 

Americans with Disabilities Still Face Sharp Gaps 32 

TSBVI Invites You to the Family Discussion Room 35 

Mentor Training Update 35 

Bits and Pieces from Here and There 36 

Katlyn's Hope, Inc 36 

Classified 37 



Editor's Corner 

Have you noticed we've made changes in SEE/HEAR? We appreciate those of you who responded to the 
survey about the newsletter which appeared in the July edition. The changes you see are in response to your 
suggestions; we hope the rest of you like them. First of all you will see that we have four sections of the 
newsletter: Family, Programming, Syndromes/Conditions, and News & Views. The section markers will 
make it easier for you to home in on your favorite part of the newsletter. The Family section will include 
articles written by family members including children and adults with visual impairments and deafblindness, 
parents, brothers and sisters, grandparents, etc. The Programming section contains articles about educational 
and rehabilitative programming and best practices. The Syndromes/Conditions section includes information 

Editor - Continued on page 9 



J 



Food, Food, Food 

By John Jackson, Parent, Nolanville, Texas 

^ "I heard there were no calories in Atlanta," our new friend Norma DiMartino stated as Treasa (my wife), 

M Norma and I looked at what turned out to be the most delicious pie we have ever tasted. Norma could not have 
l|? been more right. The whole week we got food. Food for the spirit, food for the mind, and food for our lives. 

^ Treasa and I are the proud parents of Hunter, a wonderful 2Vi year old boy with multiple disabilities. One of 

y^ Hunter's disabilities is legal blindness. Treasa, Hunter and I were in Atlanta for the International Conference 
of the Association for Education and Rehabilitation of the Blind and Visually Impaired (AER). We were able 
to attend the conference due to the combined efforts of Mollie O'Leary from the Texas Commission for the 
Blind, Jean Robinson from the Texas School for the Blind & Visually Impaired, and Brenda Frizzell from 
Child Team. 

No amount of calories could have filled the 690 participants from around the world as they came together to 
share, learn and prepare ways to enhance the lives of the population of the world whose physical vision is 
impaired. As Treasa and I saw the passion and focus of the participants we were overwhelmed by the realiza- 
tion that we and our support staff (which many envy) are not alone, but just a small part of a worldwide effort 
to enhance the lives of others. It made us all but cry. To see professionals who volunteered their time to come 
and learn new ways to help, instruct, and liberate the lives of the clients was amazing. The power of concern, 
love, and focus could have no other effect but to feed the spirit. 

While neither my wife nor I are professionals, the sessions were not so advanced that we couldn't get 
something from them. The sessions on new research and methods gave us hope for the future. Sessions on 
ways we can work with our son at home to improve his vision added to our arsenal. Ideas, ideas, and more 
ideas were freely given. When people found out we were parents they were more than free with their time to 
answer questions and give us a fresh approach to methods they used. Each person we spoke with taught us 
there is so much being done and that can be done. Yes, the calories were rich and filling, but there was always 
room for more and more willing to give. 

Food for our lives was given from the minute we walked in, and it is still being given. The conference was 
so much more than we expected while not knowing what to really expect. Being placed in an environment 
such as we were, we could walk away knowing everything is going to keep advancing in a positive direction. 
Sometimes I know that parents with children such as ours feel it is a never-ending struggle. Attending the 
conference taught me there is an end and it is success. One thing did surprise me, the lack of parents at the 
conference. I know that with the experience we had, we will be attending more in the future. You see, to 
Treasa and I the question is not how can we, but how can we not? If not us then who? 

Good Days, So-So Days, and Bad Days 

By Kenyetta Kinney, Student, Coolidge, Texas 

Editor 's note: Ann Rash, VI Outreach Education Specialist and Programming Editor for SEE/HEAR 
brought this article to our attention. This article was written last year when Kenyetta was in a combined class 
of 2 nd and 3 rd graders. Her vision difficulty is secondary to her primary diagnosis of MS, multiple sclerosis. We 
appreciate Kenyetta's willingness to share her feelings with the readers of SEE/HEAR. 

Hi, my name is Kenyetta Kinney. I am a third grader at Coolidge Elementary School in Coolidge, Texas. I 
am in a 2/3 (second- and third- grade) class and I also go to special classes for Reading and Math. I go to P. E., 

2 



Music, and Computers. We also have lunch, recess, and sometimes we have pep rallies. I like school. 

Sometimes I have bad days and good days and so-so days. This is because I am not seeing so good. I have 
people who come see me. They help me and teach me to get around safe "fl 

> 

When I have a good day I can see very good, and I can get around good all by myself. When I have a so-so 
day I have somebody help me to get around safe. When I have bad days I use sighted guide to get around safe. 
Sighted guide is when I have to hold on to somebody's arm to get around 

In the classroom I use all kinds of things to help me on all my different days. On a good day the teachers *\ 
blow up my work to make it bigger. On my so-so days I use my magnifying glass and my CCTV. A CCTV 
blows up my work, and I look at it on a TV screen. On my bad days my teachers help me practice getting 
around safe, and we talk through my work instead of writing. I work very hard on all my different days. 

I have to take medicine every morning and at night, and I have to take a shot every Friday. The medicine has 
a bad taste, but the shot doesn't hurt. I don't like taking medicine, but the doctor says I have to take it. We have 
to go all the way to Fort Worth to see the doctor. My mom takes me, and we always stop and get chicken on the 
way home. Sometimes I have to go to another doctor for my eyes. He is in Corsicana. I think I have about forty 
doctors sometimes. 

I have a bunch of special teachers who come and work with me. I go to Speech with Ms. Tooke. She reads 
books to me, and I talk to her. Mary Ann and Ms. Bunch come to see me. They help me work on feeling things 
and listening. Tonya and Rhonda come and work with me on sighted guide and asking for help when I need 
some. Debra comes to my house and is going to teach me how to cook spaghetti. She also brought me a talking 
clock so I can know what time it is. Sometimes people come and visit for only one day. They watch me and 
work with me for that day. I like it when all of them come to visit. 

I'm really like everyone else. I just have trouble seeing sometimes, and I need some help. Most days I just 
like being with my class. Sometimes I think that everybody worries about me too much, but I know they love 
and care for me. All the attention bothers me sometimes, and I get embarrassed. That's OK. I have a lot of 
jobs. I'm a girl, a lady, a person, a big sister, a daughter, a student, and a kid. . .1 just don't see good some time. 

For Your Information: 
Parents' Perspectives on . . . Behavior, Communication & Instructional Strategies 

On July 30 - August 1, 1998, eighty parents and family members from across the country attended the 
national workshop "Going for the BEST: Building Excellence and Strength Together" in St. Louis, Missouri 
sponsored by the National Technical Assistance Consortium for Children and Young Adults with Deaf-Blind- 
ness (NTAC) and the National Family Association for Deaf-Blind (NFADB). The children of these 80 indi- 
viduals represented the full diversity found in the deafblind population, as well as an age range from infant to 
young adult. The goal of the workshop was to generate a list of what the participants identified as the most 
important practices to parents in the areas of behavioral issues, communication, and instructional strategies in 
the education of their child who is deafblind. 

Linda Carter, Keith Fansler, Sareth Garcia, Patricia McCallum, and Alison Ricked are the parents from 
Texas who attended the St. Louis conference. Kate Moss from Texas Deafblind Outreach, and C. C. Davis, the 
Helen Keller National Center Regional Representative for Texas, also participated. We all greatly benefitted 
from our involvement, although we were sometimes uncomfortable with the process, since this workshop was 

3 






about the parents instructing the professionals instead of the professionals instructing the parents. It was also 
about parents teaching each other about their child's unique needs and learning how those needs were fre- 
quently the same and yet sometimes differed from another child with deafblindness. 

In a large general session, Jerry Petroff (with help from a variety of staff from NFADB, NTAC, HKNC, and 
state deafblind projects) took the parents through a process of brainstorming the critical practices, from their 
perspectives, related to communication, behavior, and instruction. Then, through a series of smaller group 
activities, this list of practices was refined and ultimately prioritized by the entire group. There were many 
interesting discussions throughout the weekend. Parents representing older individuals, babies, children with 
additional disabilities, children who used ASL, individuals from minority cultures, each brought up issues 
from their unique perspectives. Persuasive arguments were made in favor of a particular wording. Everyone 
worked hard to listen openly to what each person offered to the discussion, to really "hear" each other. The 
sharing was tremendous. The final document contains only a portion of all the ideas that were put forth by the 
group. It does serve, however, as a valuable guide to the issues families want addressed by professionals in the 
field of deafblindness, education and rehabilitation, and the community in general. 

Keith Fansler from Amarillo, Texas shared these thoughts about the gathering: "I always come away from 
these workshops and conferences with a lot of new ideas and information, sometimes it is an overwhelming 
amount. Parents always pull together, energizing each other to share their beliefs and concerns. One thing I 
have come to realize is that we all come from many different backgrounds and have many unique challenges, 
even though all of our children have some type of deafblindness. As I hear parents expressing their concerns, 
I start thinking how we all have the same common goal: the best education and jobs, heck, the best life that this 
world has to offer our specially challenged children. We are not different from any parent all over this great 
nation and around the world. We all want the best for our children; however, sometimes I think we try to 
impose what is best for our own child onto other children. We need to step back and hear where families are 
coming from sometimes. We need to make sure they feel heard, then honor and respect their beliefs." 

What follows is the list of those practices developed by the parents in St. Louis. 

PARENTS' PERSPECTIVES ON . . . 
Important Practices in Communication 

1 . Families and professionals need to gain an understanding of various communication techniques, strat- 
egies and modes in order to give the child an individualized and appropriate communication system 
that reflects the child's assessed needs and respects the family's choice. Children should be provided 
with multiple communication approaches including total communication, sign language, pictures and 
augmentative communication methods in both home and school environments. 

2. Teachers and service providers must understand that all behavior has a communicative function and 
should not be a "problem." Individuals who are deafblind should have the opportunity to express their 
needs and frustrations without being judged. 

3. Each individual who is deafblind should be provided a communication facilitator (certified inter- 
preter, trained intervener, teacher assistant, etc.). 

4. Training should be provided to ensure that a variety of people are able to communicate with the child. 

5. Children and adults who are deafblind should be given the right to communicate and be "listened to" 
with adequate time to respond. 

4 



6. Children and adults who are deafblind should be provided with the necessary tools to encourage 
acceptance into his or her preferred community (i.e., deaf community or other appropriate communi- 
ties). 

7. Individuals who are deafblind should be provided the opportunities to succeed, take risks and even 
fail. 

8. American Sign Language should be offered as a foreign/second language in school and community 
settings. 

9. Communities and businesses should provide access to communication (in a variety of modalities). 

10. Professionals and paraprofessionals should be appropriately trained and required to maintain high 
standards of practice. 

Important Practices in Instructional Strategies and Program Development 

1. A range of housing, supported living, supported and independent work, community, recreation and 
social options should be available. 

2. Expectations for the child should not be underestimated. Give the child opportunities to succeed, take 
risks and even fail in an environment of security, affection, and love. Focus instruction on the 
strengths of the individual with expectations for success. 

3. Provide activities that are age appropriate and meet the child's needs. 

4. Parents should be provided with training which enables them to be advocates for their child (i.e., 
teaching strategies, futures planning, legislation, how to understand the planning process, etc.). 

5. Families and service providers need to be able to teach advocacy skills to the child. The process 
should continue over a lifetime. 

6. It is important for the individual who is deafblind to have a place in his or her community with access 
to a full spectrum of life experiences. 

7. There should be increased community awareness and choices for persons who are deafblind (i.e., 
social opportunities). 

8. Provisions for a continuum of life-long services. Provide continued and non-interrupted services 
needed throughout the life of the deafblind individual. 

9. It is important for local and state community services to be mandated and funded for deafblind youth 
and adults. 

10. The deafblind individual must be a valued member of a community that affords him or her a full 
spectrum of accessible life experiences. 

Important Practices In Positive Behavior Strategies 

1 . Behavior is a communicative function that must be understood and acknowledged as communication. 

5 



*n 



i 



2. Individuals with deafblindness have unique needs that must be met. Their individual likes, dislikes 
and personality must be respected. 

/* 3. All service providers, including those in the mental health field, need comprehensive training about 

(pj the uniqueness of deafblindness and its impact on behavior. A range of services must also be avail- 

able. 

4. All persons who interact with the deafblind individual must understand the impact of deafblindness 
on life. 



5. All deafblind youth and young adults need to be prepared and trained in self-advocacy and leadership. 

6. All parents of deafblind children need networking opportunities to share information on behavioral 
issues in order to learn new ideas and strategies. 

7. Service providers and others should know appropriate, current, and positive behavior strategies and 
supports. 

8. It is important to provide the individual who is deafblind with a sense of security, affection, love and 
patience. 

9. Encourage self-advocacy from an early age, focusing on the person first, not the disability. 

10. Members of a team and other service providers working with the individual who is deafblind must 
understand that medical issues/medication can impact behavior. 

Student's Will to Survive with Visual Impairments Brightens School Halls 

By Timothy Hatch, Student, Flour Bluff, Texas 

Editor 's Note: Toward the end of last school year, one of the Outreach staff shared this article with me 
written by Timothy Hatch. It was originally published in the school newspaper of Flour Bluff High School 
near Corpus Christi where Timothy, a student who has low vision, was a freshman. 

The bell rings. You step outside the door and hear a rush of people come by. Nothing is recognizable. You 
can only see light and dark or your vision is so bad you don't recognize your friends across the hall at their 
lockers. This is what life is like for sophomores Shannon McGinnis and Marion Webb. 

"I can only see five feet in front of me. My vision is 20/1600," Shannon said. That means that Shannon can 
see at 20 feet what a sighted person can at 1600 ft. 

Getting around school can be very frightening when you first lose your vision, but after Orientation and 
Mobility training, it's not any harder than being sighted. Orientation and Mobility is learning to become 
familiar with your surroundings, and navigating through your world with a visual impairment. 

"Teaching visually impaired kids is different because I have to put myself in their shoes," vision teacher 
Michelle Hartig said. 

With the help of her friends and Orientation and Mobility training, Shannon can get around school with no 

6 



help. Unlike Shannon, Marion has to deal with getting around in a wheelchair, as well as a visual impairment. 

"It's sort of easy because people help me with my wheelchair and they like my monocular," Marion said. 

As for me (Timothy), I'm the one always wearing a hat or visor which helps me see. I have 20/80 vision, so 
it's hard to see fifteen feet away. The hat helps me by eliminating glare. 



^fl 



■< 



It may be hard to tell if Shannon is visually impaired if you don't watch closely. Blind people who are very 
outgoing adapt to their impairment faster. However there are times when people notice Shannon's visual 
impairment. 

"Some people think I have no feelings and that they are better than me," Shannon said. Marion said that she 
rarely gets teased. 

In a survey, 63% said they would be able to adapt to their visual impairment if they were blinded. The 
survey also showed that blind and visually impaired have the same capabilities as sighted people. 

"Visually impaired students aren't any different from sighted people. They can see, just not through their 
eyes," said freshman Jonathan Valk. 

Welcome to Our-Kids <http://rdz.acor.org/lists/our-kids/> 

Reprinted with permission 

Our-Kids is a "Family" of parents, caregivers and others who are working with children with physical and/ 
or mental disabilities and delays. We call the list "Our-Kids". While it isn't exactly descriptive, it avoids the 
pitfalls of labeling our kids anything but what they most certainly are: The wonderful little people in our lives. 

The Our-Kids list consists of over 800 people representing children of varying diagnoses; everything from 
indefinite developmental delays and sensory integration problems, to cerebral palsy, to rare genetic disorders. 
Over 35 countries are represented on the list now. 

Here we can discuss our children's accomplishments and defeats, knowing that the audience includes others 
who know what we are going through. We can also get some idea of how others address specific problems/ 
concerns with feeding, learning, schools, medical resources, techniques and equipment, as well as describing 
the problems to friends and family or just coping. A few professionals, organizations and therapists also 
monitor and contribute to the list. This list is not for the canvassing of any particular religious or political 
ideals nor is it a forum to debate for/against abortion or euthanasia. In fact, the list is not for debate whatsoever. 
The sole purpose of this list is for support and information for ourselves and our kids. 

My name is Randy, and I represent my son Sean, who is 6 years old and has severe cerebral palsy, spastic- 
quad, as a result of severe muconium aspiration. Sean is non-verbal and non-ambulatory. He is very aware 
though, has a great laugh, and a horrible grump which he has artfully mastered to effectively manipulate his 
daddy. The originator of this list is Ashley, who formed this list in January 1993 on behalf of her son Austin, 
who has Angleman Syndrome, on the basis of chromosomal testing. 

Some of the kids represented on this list have more severe problems than ours, while others do not. Some 
are further ahead in capability and age, while others are not. But all of us and our kids have all benefited in the 
areas of support and knowledge thanks to the wonderful participants of this list. Please join us. 

7 



About the Sibling Support Project 

Reprinted with permission from the Sibling Support Project 

The Sibling Support Project is a national program dedicated to the interests of brothers and sisters of people 
with special health and developmental needs. The Project's primary goal is to increase the availability of peer 
support and education programs for brothers and sisters of people with special health and developmental needs. 

GOALS OF THE SIBLING SUPPORT PROJECT 

To accomplish this goal, project staff: 

• create awareness materials (e.g., curricula, children's books, websites, newsletters) for parents, 
service providers, and brothers and sisters; 

• conduct workshops in each of the 50 states for parents and providers on the life-long issues facing 
brothers and sisters and how to start a Sibshop; 

• provide technical assistance to those starting a local Sibshop; 

• maintain a database of over 200 Sibshops and other sibling programs across the United States; 

• conduct Sibshops for Seattle-area brothers and sisters of children with special health and develop 
mental needs and 

• evaluate the effects of programs for siblings. 

MATERIALS 

Materials created by Sibling Support Project staff include: 

• Sibshops: Workshops for brothers and sisters of children with special needs, 1994, by Donald J. 
Meyer and Patricia F. Vadasy (Baltimore: Paul H. Brookes). To order call (800) 638-3775. Also 
available at Barnes and Noble Bookstores. 

• Living with a brother or sister with special needs: A book for sibs, 1996, (2nd edition, revised and 
expanded) by Donald Meyer and Patricia Vadasy (Seattle: University of Washington Press). To 
order call 1-800-441-41 15. Also available at Barnes and Noble Bookstores. 

• Uncommon Fathers: Reflections on raising a child with a disability, 1995, Donald Meyer (ed.). 
(Bethesda, Maryland: Woodbine House). To order, call (800) 843-7323. Also available from 
Barnes and Noble bookstores. 

• Views from our Shoes: Growing up with a brother or sister with special needs, 1997, by Donald 
Meyer (ed.) (Bethesda, Maryland: Woodbine House). To order, call (800) 843-7323. Also avail- 
able from Barnes and Noble bookstores. 

• The National Association of Sibling Programs (NASP) Newsletter. The Sibling Support Project, 
CL-09, Children's Hospital and Medical Center, 4800 Sand Point Way, NE Seattle, WA 98105. 

• Sibling Support Project Web Page: <http://www.chmc.org/departmt/sibsupp>. 

• The SibNet and SibKids Listservs, email-type bulletin boards for brothers and sisters of all ages and 
others interested in the well-being of siblings. 

For a free subscription, visit the Sibling Support Project Web Page or contact the Sibling Support Project. 
The Sibling Support Project receives funding from the U.S. Department of Education, Office of Special Education, 

8 



Personnel Preparation Program. For more information about Sibshops and the Sibling Support Project, contact: 

Donald Meyer, Director, The Sibling Support Project 

Children's Hospital and Medical Center, PO Box 537 1 , CL-09, Seattle, WA 98 105 ^ 

phone: (206) 368-4911 fax: (206) 368-4816 email: dmeyer@chmc.org 

<http://www.chmc.org/departmt/sibsupp/> 



PRESENTING SIB TO SIB! 

Sib to Sib! is a newsletter for brothers and sisters. Should you wish, you can subscribe to Sib to Sib!. At the 
moment, the subscription to Sib to Sib! is free-and it doesn't get much better than that, eh? To subscribe, write: 
Andrew Lanier, Sib to Sib! Editor 
c/o Rhoda Berlin 
Little Red School House 
P.O. Box 992 
Lynnwood, WA 9804 

It is a pleasure to present a Web version of the Sib to Sib! newsletter! To get to the Sib to Sib! newsletter go 
to <http://www.chmc.org/departmt/sibsupp/newsletters.htm>. Written, edited, and published by our Sibshop 
friends in Lynnwood, Washington, Sib to Sib! features articles written for and by brothers and sisters of kids 
with special needs. 



Editor - Continued from page 1 

about specific syndromes or conditions that occur with children who have visual impairments and/or 
deafblindness such as Usher Syndrome, retinoblastoma, cerebral palsy, ROP, etc. The News & Views section 
contains information on legislative issues, resources, workshops, agencies, etc. We will also continue to offer 
the newsletter in a range of formats: English and Spanish regular print, and English large print, braille, disk, 
and audio. We are also now making the full newsletter, in both English and Spanish, available on the TSBVI 
website at <www.tsbvi.edu>. You can also find many articles from past editions of both the English and 
Spanish version of SEE/HEAR archived there. 

The other big change with SEE/HEAR involves the addition of several more staff members. Joining the 
SEE/HEAR publication committee are: Jean Robinson, Family Editor, Ann Rash, Programming Editor, Gigi 
Newton, Syndromes/Conditions Editor, and Jim Durkel, News & Views Editor. Returning to Deafblind Out- 
reach this fall is one of my dear friends, Craig Axelrod; we are all so pleased to have him back with us. Craig 
will take over as Layout Editor. Of course, Berta Green, Production Editor and Edgenie Lindquist, TCB 
Editor continue to do the great work I've come to depend on in getting the newsletter out to you. I will serve 
as Editor-in-Chief. Once again Jim Allan, Webmaster from TSBVI, Recording for the Blind & Dyslexic, and 
Juanita Barker and Stephanie Campbell from TCB in Lubbock will lend their support to our efforts. 

Please let us hear from you regarding the changes we have made. Our goal is to make the information in 
SEE/HEAR practical, timely, and enjoyable to read. Let us know if you think we are meeting our goal. You 
may contact me at TSBVI, Texas Deafblind Outreach, 1100 West 45th St., Austin, TX 78756, phone (512) 
206-9224 or (800) 872-5273, or email to moss_k@tsbl.tsbvi.edu. 

Let me also encourage you to visit the TSBVI web page. Our web address is <www.tsbvi.edu>. If you do 
not have a computer at home, go to your public library. Most libraries now have Internet access. You can find 
the web version of our newsletter, publications from our school, plus much more. Check us out! 



r < 



Orientation and Mobility Training: The Way to Go 

By Carolina Martinez, O & M Specialist, TSBVI 

with help from Kate Moss, Family Support Specialist, TSBVI, Texas Deafblind Outreach 

WHAT IS O & M? 

Movement is a building block for learning. As a child explores his world and has physical contact with it, 
learning takes place. Children with visual impairments typically need encouragement to explore their sur- 
roundings. To them the world may be a startling and unpredictable place, or it may not be very motivating. 

Orientation and mobility training (O & M) helps a blind or visually impaired child know where he is in 
space and where he wants to go (orientation). It also helps him be able to carry out a plan to get there (mobility). 
Orientation and mobility skills should begin to be developed in infancy starting with basic body awareness and 

fl movement, and continuing on into adulthood as the individual learns skills that allow him to navigate his world 

*y efficiently, effectively, and safely. 

Orientation and mobility training actually began after World War II when techniques were developed to 
help veterans who had been blinded. In the 1960s universities started training programs for Orientation and 
Mobility Specialists who worked with adults and school-aged children. In the 1980s the O & M field recog- 
nized the benefit of providing services to preschool-aged children. Today, orientation and mobility specialists 
have developed strategies and approaches for serving increasingly younger populations so that O & M training 
may begin in infancy. 





Cu 



WHAT SKILLS ARE TAUGHT THROUGH O & M? 

When planning an O & M program for children the focus of training may include such things as: 

• sensory awareness: gaining information about the world through hearing, smell, touch and 
proprioception 

• spatial concepts: realizing that objects exist even if not heard or felt, and understanding the 
relationships which exist between objects in the environment 

• searching skills: locating items or places efficiently 

• independent movement: which includes crawling, rolling, walking, etc. 

• sighted guide: using another person to aid in travel 

• protective techniques: specific skills which provide added protection in unfamiliar areas 

• cane skills: use of various cane techniques to clear one's path or to locate objects along the way 

Although Orientation & Mobility Specialists are primarily responsible for O & M training, their work may 
not always be done directly with the child. When the child is very young, for example, the O&M may provide 
consultation to the vision teacher, occupational therapist, physical therapist, early intervention specialist, and 
the family. It is important that an O & M Specialist be a part of the team because it is the O & M who must 
build upon these early concepts to meet long-range goals. In Texas, the vision teacher makes the referral to the 
O&M Specialist for an O & M assessment. 

Even visually impaired children who have motor impairments need training in orientation and mobility. 
Though their O&M goal may not be independent travel, they may need O&M to participate more fully in 
events in their environment. For example, understanding that your wheelchair is in front of you can help you 
find it to assist with the transfer to the chair. Knowing that your switch is on the right side of your lap-tray may 
allow you to play your CD player whenever you choose, instead of having to wait for someone to come help 
you. Even if you are not yet walking, it would probably be good to know that you could listen for the sounds 
mom is making in the kitchen to help you find your way to her. 

10 



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8 



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Children who are deafblind also need orientation and mobility training. Because their other distance sense 
(hearing) is affected, orienting to their environment and traveling safely becomes even more important. Orien- 
tation and mobility specialists have specific knowledge which is critical to the child with deafblindness. 

Orientation and mobility is important for every visually impaired child. It does not matter how young or old 
he is, how physically active or inactive, how much vision he has, or how smart a child he is, there are probably 
skills that he needs to develop or refine in the area of orientation and mobility. 

LOOKING AT O & M SKILLS 
Sensory awareness 

When a child can not access his world efficiently through his vision, he must learn to use his other senses 
more effectively. Systematic instruction is needed to develop the other senses for use in travel and finding 
things in the environment. He must understand that some of the sounds and smells and textures he experiences 5J 
can be used as permanent markers (landmarks) to let him know where he is in the world. Other pieces of 
information may be there sometimes and not at other times (clues) such as the sound of the water fountain. 
Developing sensory awareness is critical for the child with visual impairments or blindness. 

Sounds, when not paired with clear visual information, can be very confusing. Try sitting in a busy mall or 
park for a period of time with your eyes closed. You will probably hear sounds you can't identify and be 
tempted to open your eyes, to try to pair a sound to its source. You might assume that sounds which get louder 
and louder are coming towards you because of your visual knowledge of the world. A child with a visual 
impairment may not make the same assumption. The ringing noise he hears may not mean "telephone" or that 
the honking sound may not mean "car." He needs help in learning to use his hearing to interpret the world 
around him. If his hearing is impaired even to a small degree that task will become much more difficult. Close 
your eyes and plug your ears while you stand on a busy street corner. Can you tell which way the traffic is 
flowing or when it will be safe to cross the street? Are you startled or distracted by other noises you hear? 
Children need to learn to localize sounds and use sound clues for orientation, straight line travel, and safety. 

Though we may not be aware of it, we know much of the world through touch. However, if the things you 
touch or that touch you feel funny, or hurt, you may become resistant to using touch to examine things in your 
environment. Touch alone may not be helpful in identifying an object if you can't touch the whole object at one 
time. Is the furry thing a cat or a rabbit? If you aren't touching the ears or the teeth or the tail you might not 
know. Developing the tactual sense will help the child in ways that range from finding a toy he dropped on the 
floor to feeling the difference between the curb and the street with his cane. 

Normally I don't pay much attention to smells unless they are extremely pleasant or offensive, but I might 
use that kind of information to help me know exactly where I am in certain environments. Smells can also 
serve as landmarks and clues for environmental awareness. For example, the smells that can be found in my 
kitchen differ greatly from the smells in my bedroom. I can also smell food being cooked near mealtime in my 
kitchen, but after a meal I am more likely to smell the soap used in the dishwasher. If I am looking for a clue 
to my location, I need to know that both of those smells might mean I'm in the kitchen. The gym at school, 
unlike my kitchen at home, might always smell about the same. If I have no sight, this smell, especially 
combined with other clues and landmarks, might help me know that I am in the gym. 

It is important for children with visual impairments to participate in activities that enable them to fully use 
their other senses. Learning to interpret the information they tune in to is equally important. Parents and 
educational staff, with support from the O & M, can do a lot to help children develop their other senses. 

11 



I 



Spatial concepts 

"Go down the street three blocks and turn right at the corner. I live in the upstairs apartment of the large, red 
brick building on the left." Pretty clear directions right? What if you don't know "blocks" and "corner" or 
"upstairs" and "left"? Doesn't "down" mean under? How large is "large?" When vision is impaired these 
concepts are much more difficult to understand and need to be taught. How do you teach the concept of 
"corner" without vision? Do you touch corners or draw corners? If you can touch a corner or draw a corner, 
where do I find the corner to touch when I am walking along the street? 

Orientation and mobility specialists work to develop distance, size and directional concepts in children with 
visual impairments. Mom and Dad, and Mrs. Henry the art teacher, may work on these concepts too, but 
having the support of an O & M would likely make their job much easier. 

Our joints and muscles give us feedback about where our body parts are positioned. This is our propriocep- 
tive sense. Proprioceptors located in the muscles and joints tell us if we are slumping or standing up straight, 
if our fingers are curled or extended, etc. Our vision system and our proprioceptive system work closely 
together. When vision is impacted, so is our proprioceptive sense. Children with visual impairments generally 
need help to learn where their bodies are in space, and in relation to things in the environment. The physical 
therapist and occupational therapist, along with the O & M, can work directly with the child. They may also be 
able to suggest specific activities for the family, to help their visually impaired child develop the propriocep- 
tive sense. 

Independent movement 

Most children with visual impairments are capable of learning routes in familiar environments. They learn 
to use landmarks and clues to help them know where they are along a particular route. They learn specific 
adaptations to aid them in their movement. These might include understanding that tactual markers on door- 
ways identify the gym or the restroom, using an adaptive mobility device or a cane to identify obstacles and 
drop-offs, or locating a street sign using a monocular. A primary goal of orientation and mobility training is to 
help each child with visual impairments achieve independent movement to as great a degree as possible. 

Some children may be preparing to get a dog guide, or learning how to access public transportation to get 
across town to a job. For children with additional disabilities, independent movement might focus on traveling 
independently in a wheelchair, or learning how to help get yourself into a van using a lift. It might mean 
helping the child learn to control the speed of movement on his walker as he goes down a ramp. 

Independent movement is tied to growth in other areas, such as communication and socialization. For 
example, though a child may not be able to tell you he's hungry, if he can take you to the kitchen you will 
probably understand that he wants something to eat or drink. Peers are more likely to invite your daughter to go 
to the mall if she can keep up with the group by using sighted guide technique or traveling with a cane. Going 
where we want when we want gives us control and allows us to make choices. 

ELECTRONIC AIDS FOR ORIENTATION AND MOBILITY 

There are a variety of O&M devices that individuals with visual impairment use. Most are considered "low 
tech" because they are very simple devices, typically a cane or adaptive mobility device. These are the devices 
that most people with visual impairment will use for two good reasons: (1) they are relatively inexpensive to 
purchase and maintain, and (2) you typically must be able to use these basic devices (especially a cane) before 
you can learn to use other types of mobility devices or strategies such as ultrasonic technology or dog guides. 
Your O&M specialist can show you canes and adaptive mobility devices and will be able to dispense these 

12 



"low tech" devices to your child. There are also other O&M devices, more "high tech" and less well known, 
that we thought you might like to learn about. These devices can only be issued by an O & M Specialist with 
ETA certification. The ETA certified O&M Specialist must also provide training in the use of these devices. 
Non-ETA certified O&M Specialists may not dispense or train individuals using these devices. 

The Sonic Pathfinder is a head mounted ultrasonic mobility device designed for outdoor use in conjunc- 
tion with either a long cane, dog guide or residual vision. The Sonic Pathfinder gives the user advance warning 
of objects which lie within the travel path. The distance and position of a detected object is signaled via the ear 
pieces using the eight tones of the musical scale. Price: $1695, plus $20 shipping & handling. 

The Sensory 6 detects objects that are farther away than a long cane, and the user hears tones that indicate 
the distance to the objects. As objects are approached, the tones become higher pitched. The Sensory 6 is not 
intended to be the only travel aid. It should probably be used in conjunction with another aid, such as a cane. 
Price: $975, plus $15 shipping & handling. 

The MO WAT Sensor is a small hand-held device that uses high frequency sound to detect objects within a J* 
narrow beam. The entire sensor vibrates if an object is present. To avoid confusion, the sensor responds only 
to the closest object within the beam and the vibration rate increases as the user approaches the object. Price: 
$995, plus $20 shipping & handling. 








The Polaron is a compact aid that utilizes ultrasonic technology to detect objects within four, eight, or 
sixteen feet. The Polaron may be used as a secondary aid to a standard long cane, or with a guide dog. When 
an obstacle is within range, the Polaron either vibrates or emits a sound. The Polaron is designed specifically 
for the blind, visually impaired and deafblind wheelchair user. Price: approximately $900. 

The Wheelchair Pathfinder is a set of small rectangular boxes mounted to the front of the wheelchair. ^ 
Lasers point downward while ultrasonic beams are transmitted in front and to the sides of the wheelchair. L J 
When the beam contacts an object, it bounces back to a receiver, triggering an audible warning signal or 
optional tactile signal. The Wheelchair Pathfinder has forward detection (an intermittent beeping sound), side 
detection (a continuous tone on the side where the object is) and step detection (a low pitch signal within 4 feet 
in front of a drop off). Price: approximately $4,500. 

The Laser Cane operates with three lasers that emit invisible beams of light from the cane. The beams 
detect drop offs and obstacles at different heights and distances. In this way, the cane provides the user with 
advance warning of obstacles in his/her path through an audible and tactual alarm system. There are three 
distinctly different audible tones: high, middle, and low pitched. The vibrating unit, known as the tactile 
stimulator, signals the index finger when there is an obstruction straight ahead. Price: approximately $200. 

For more information on these electronic devices contact: MSI Mobility Services Inc., 761 Peachtree St. 
Suite 3, Atlanta, GA 30308, phone (800) 876-2636. Similar devices may be available from other companies. 
TSBVI does not intend to recommend these products over any other. 

CONCLUSION 

Independent movement is critical for all children with visual impairments. Orientation and Mobility spe- 
cialists are trained to provide instruction which will enable children with visual impairments to reach their 
highest level of independence. The services provided by an O & M may not always need to be delivered 
directly to be effective, but even infants or children with multiple disabilities need the special support of a 
trained Orientation & Mobility Specialist. Make sure your child's O&M needs are being addressed as a part 
of his/her school programming. You may want to meet with your school's Orientation and Mobility Specialist 
to discuss your concerns. If your school district does not have its own O & M, ask your child's vision teacher 
to help you connect with the O & M at the Regional Education Service Center or Special Education Co-op in 
your area. Orientation and mobility training... it's the way to go. 

13 



RESOURCES ON ORIENTATION & MOBILITY 

Association for Education and Rehabilitation of the Blind and Visually Impaired (AER) 
Division 9, Orientation and Mobility 
4600 Duke Street, Suite 430 
Alexandria, VA 22304 
(703) 823-9690 

Living Book Online - Orientation and Mobility Book 
<http://isd.saginaw.kl2.mi.us/~mobility/index.htm> 

Reaching, Crawling, Walking . . .Orientation and Mobility for Preschool Children by Susan S. Simmons, 
Ph.D. and Sharon O'Mara Maida, M.Ed, available from the Blind Childrens Center, 4120 Marathon St., Los 
Angeles, CA 90029, phone (213) 664-2153 or (800) 222-3566, web page <http://www3.primenet.com/bcc/ 
about.htmx 



O & M Around the World 

By Rhonda Adams, COMS, Education Service Center Region 12 

This summer I had the opportunity to attend the ninth International Mobility Conference in Atlanta, Geor- 
gia. This was truly one of the greatest experiences of my professional career! It was awesome and amazing to 
sit and talk with other O&M Specialists from all over the world, to see where their needs are, the research they 
are developing, and the difficulties they face. 

During the pre-conference, at any point in time, I would find myself sitting next to O & M specialists from 
Uganda, Botswana, Denmark, Bahran, Saudi Arabia, Estonia, Australia, Israel, Poland, South Africa, Fiji, 
Mexico, Spain, Japan, China, Canada, and other places. It was nice to see that many of the problems I face in 
the USA are the same problems O&M Specialists face the world over. I found it very heart wrenching to listen 
to international O&M Specialists discuss their case loads. In Alberta, Canada there are three O&M Special- 
ists, and each has a caseload of ninety. There is no O & M in the country of Botswana. That country is trying 
to start a training program for O&M, but is having difficulty finding a sponsor. In Uganda there are an 
estimated five-hundred-thousand individuals with visual impairments. Only fifty of these individuals have 
received O&M services, and that thanks to training sponsored by Norway. 

I was also struck by the amounts of research other countries are doing. There was research presented by the 
USA, but not nearly as much as is being done in other countries. Germany is finishing up research on infant 
and toddler O&M training. They are also designing an assessment based on their findings. This research is 
not yet available in English. 

I also had the opportunity to visit with vendors from all over the world. I saw the ultimate in travel canes. 
It is manufactured in Germany and costs approximately $220 dollars (U.S.). It seems that the socialized 
medical system allows for higher prices. I also saw firsthand the advancements in cane tip manufacturing, new 
and more flexible canes (color coded), and the advancements in audible street signals. 

I came away from this conference with a new and refreshed view of O &M and the impact our profession 

has on the consumers of our services. The next International Mobility Conference will be in the summer of 

2000 in Warwick, England. It looks like it will be very affordable! Start making plans now to attend. I promise 

it's worth it! 

14 



Hand-Over-Hand Guidance: What Lesson Do We Teach? 

By Andrea Story, Anchorage, Alaska 
originally published in The National Newspatch, November 1997 

reprinted with permission 

Independence is emphasized in much of the literature concerning young children who are blind. In the 
revised edition of Can 't Your Child See? A Guide for Parents of Visually Impaired Children it states that, "The 
more they (parents) teach the child to function independently in the first three or four years, the less they will 
have to do later (Scott, Jan, Freeman, 1985)." But how do you "teach" independence to a one-, two-, or three- 
year-old child without sight? How do you bring the world to the child and how do you teach skills such as 
putting on a jacket without making the child dependent on constant prompts and cues? It has often been 
observed that many children with visual impairments, especially those with additional impairments, are much 
more passive than their sighted peers. They seem to think of themselves not as a doer but as one who must wait 
for assistance or a prompt. jjg 



Literature on young children with blindness often mentions the "fairy godmother" syndrome. The child has A 
little information to make the connections of how and why things are appearing and disappearing within their 
world. There is also the concern of imitation: how do you show a child how to eat with a spoon if they can't 
see how others are doing it? The solution offered for these concerns has often been a hand-over-hand guide 
technique. The adult holds the back of the child's hand and the child is guided to the objects to be explored and 
guided through the motions of the activity to be learned. 



Some have begun to question and reject this method. Dr. Lilli Nielsen of Denmark noticed that children 
often pulled away when an adult attempted to direct or guide the child's hands. Lilli writes, "I changed my 
approach so that guiding or leading the child's hand was used infrequently. This resulted in the children 
seldom withdrawing their hands. On the contrary they became more eager to initiate exploration and examine 
objects, thus improving their ability to grasp and to use their hands in various ways." (Nielsen, 1992) 

Watching Nielsen play with a child, one can see how touching the inside of the child's hand with an object 
elicits a grasp quickly and much more independently on the child's part than forcibly placing the child's hand 
on the same objects. Once the child is motivated by the objects, a reach and grasp can be elicited by a sound or 
vibration nearby. The children she has worked with at her presentations often begin to imitate activities such 
as strumming a stringed instrument, blowing into a harmonica, or dropping balls into a container. The 
children's hands were never guided, and they stayed actively engaged for up to an hour. The children's parents, 
teachers, and therapists are often amazed at how much the child would do for Lilli. A bigger challenge may be 
the very passive child who moves very little. It will take these children longer to learn, and small steps should 
be appreciated when they do occur. As Lilli has said, these children do not have time to waste. 

Enthused by Nielsen's results, many who attend her lectures focus on equipment such as the Little 
RoomrrM), and yet continue to guide the child's hand. The child's reaction is most often to pull their hands 
away, or to passively allow their hands to be manipulated. It is an issue that I still struggle with, for although 
I have seen some wonderful results in using alternatives, I still have to sit on my own hands sometimes to stop 
myself from guiding a child's hand. Even if I do restrain my own hands, I still have to convince educators, 
therapists, and parents that there are alternatives. Fortunately, some of the parents I've worked with have had 
success with getting their children to hold their own bottle, finger feed, and eventually spoon feed without 
guiding/controlling their child's hands. These successes make me question the standard advice given parents 
and others about teaching a child without sight. 

15 



■o 



z 





Hand-over-hand guidance is recommended in most of the literature (or at least there are photos or videos 
demonstrating it). For a sighted person, it seems an almost instinctual response to guide the child's hands. 
Some children protest the guidance but eventually come to accept it and wait for "their turn" to explore. How 
frustrating to have to wait to explore something yourself! One child that I worked with seemed to actually 
enjoy the hand-over-hand guidance for finger plays and songs but was still quick to push the adult's hands 
away if the activity or object was unfamiliar to her. Other children seem much more affected by the technique 
and become more passive, or more defensive, to touch. These children do not repeat the skill by themselves 
after being guided. It should be considered that this technique of guiding a child's hand has been used too often 
and too quickly. Often it seems that the sighted person forgets or is unaware of the unique perspective of those 
that are blind. Martha Pamperin wrote about this perspective on the AER listserv recently. 

"As I, a blind adult, go about getting myself a cup of coffee, I may (1) search the shelf factually to locate cup 

and coffee pot, before (2) pouring the coffee. This preliminary search is normal for me, especially if I am at the 

[*\ home of a friend. It does not, however, look normal to the watching friend. Often as not, the friend concludes 

*j that I am not able to pour coffee and does it for me or watches in amazement as I do it myself. Since a blind 

person, at the beginning of a task, uses a tactual search to substitute for the visual search made by a sighted 

person, blind people can "look" unable when they are actually very able indeed." 



8 



Martha compares the sighted method vs. the tactual method of putting a jacket on. 

"While the sighted kindergartner ( 1 ) sees the arm hole where his arm needs to go, and (2) puts his arm right 
in, the blind child will probably ( 1 ) aim his arm in the general direction of the arm hole and touch the front or 
back of the jacket, feel around to find the arm hole, then (2) put his arm it. It is hard to resist directing the arm 
into the arm hole or moving the jacket. . . . The tactual search and the pause for auditory searching may make 
us look blind, but, surprise, surprise, we are blind. Consider the beauty of gently searching hands and the 
wonderful awareness of the listening posture. Wait, let it be." 

Another educator who is searching for alternatives to controlling hands is Barbara Miles, who presented a 
workshop entitled "Hands: Tools, Sense Organs, Voice" at the 1997 National Conference on Deafblindness. 
Barbara listed this topic, among others in her agenda; "skillful ways of touching and inviting touch, including 
alternatives to "hand-over-hand" techniques." Barbara showed a video in which she gained the trust of a child 
described as tactually defensive. Barbara used her hands to "invite" and "comment" on objects and activities 
rather than directing his activity. Her hands followed the child's very gently, and were slightly under the child's 
hands rather than over them, thus allowing the child to know that his tactile attention was shared. From this 
hand-under-hand position, the teacher could gently invite the child to touch an object or person without con- 
trolling. This freedom resulted in dramatically increased hand activity. 

Consider the O&M technique of the sighted guide. We are taught that the sighted guide does not hold onto 
the blind person's arm and pull — that would take all control away from the one being guided. The guiding 
must be invited and even then it is understood that the one being guided will have a harder time repeating the 
route by themselves because the guide-ee is dependent on the guide-er. 

Hand-over-hand guidance has been promoted as a catchall solution without much question as how it is 
done, when, and why. The challenge remains in our work with young children to explore this issue of teaching, 
yet still promote independence. 

If you want more information about the National Newspatch please contact: Marilyn Gense, Oregon De- 
partment of Education, 255 Capitol St. NE, Salem, OR 97310-0203, phone (503) 378-3598, ext. 653, email: 
marilyn.gense@state.or.us. 

16 



Read Any Good Books Lately? 

Compiled by Ann Rash, Teacher Trainer, TSBVI, VI Outreach 

A vision loss impacts all areas of development. As vision teachers, we do not always have the expertise we 
need in motor and language development. We usually work closely with the speech therapists and occupational 
therapists but they do not always have the needed expertise on the impact of the vision loss. A possible solution 
would be to read and share these two new booklets from the TSBVI curriculum department, written by an OT 
for OTs and a speech therapist for speech therapists. 

FOR OTS AND PTS 

Excerpted from Impact of Vision Loss on Motor Development: Information for Occupational and Physical 
Therapists Working with Students with Visual Impairments by Chris Strickling, OTR (Pages 13-14). 

Mouthing Persists ^0 

Mouthing gives information about temperature, composition, texture, shape, and weight. This information w 
is sometimes unavailable through other means for the child with low vision or blindness, so mouthing will U 
sometimes persist up to age 4 or 5 or beyond. Children with low vision also use their chins and mouths as 
stabilizers. They are reluctant to put the objects down because putting an object down often means losing it. 
Mouthing usually diminishes as pincer grasp is developed, which can be quite late for these children. 



Possible Interventions: 

Ask yourself these questions when considering whether or not to intervene in mouthing behaviors: 

Is there functional use of objects, or just mouthing? 

If the student already has some functional manipulation schemes with objects, redirect the mouthing behav- 
ior to more appropriate manipulation. If not, try to engage the child in a meaningful action on the object as a 
replacement. Teaching more meaningful interactions with objects will often result in a decrease in mouthing. 

Is this the child's only way to explore the object? 

If the child is not yet ready for manipulation schemes, then helping the child explore the object will expand 
the child's exploration. Using the object in a game, adding pressure to the object and contacting the body with 
it; and adding texture, vibration, or sound to the action of the object are all ways of increasing exploration. In 
some cases offering more and different objects to explore orally before attempting to move the child from 
mouthing to a more mature exploration may be helpful. Alternatives for appropriate oral stimulation should be 
considered if mouthing is being used to increase sensory awareness. 

Is the mouthing for exploration or just a way to retain the object? 

Teach the child how to keep an object within grasp by providing a container, placing it in a pocket, or 
establishing some other place for it. Mouthing is sometimes just a way to keep objects close at hand. 

FOR SPEECH-LANGUAGE PATHOLOGISTS 

Excerpted from Language Assessment and Intervention with Children Who Have Visual Impairments: A 
Guide for Speech-Language Pathologists by Maria L. Munoz, M.A., CCC-SLP (Page 22). 

17 



Z 





Effective Intervention Strategies 

Visually impaired children who also have language impairments may have difficulty relating the language 
they hear to their sensory experiences, so these connections must be taught explicitly. Children need to relate 
sensory events to the language of an event. Developing these relationships helps children learn to organize and 
interpret information. One effective strategy is to modify what the child is already doing to make it more 
functional. Children who are echolalic or who use only question forms are trying to fulfill particular commu- 
nicative functions, such as commenting, requesting, or maintaining an interaction. An SLP can model more 
appropriate language for the child to meet these functions. 

When working with children with visual impairments, these additional guidelines will enhance the effec- 
tiveness of intervention strategies. Such strategies should: 

• Be concrete and experientially based using multisensory approaches, including touch, taste, smell, 
hearing, and vision 

• Be relevant to the child's daily experiences 

• Facilitate the generalization of skills 

• Expand the child's repertoire of meaningful topics by providing the language needed to talk about 
familiar events 

• Be structured to make novel experiences more comprehensible AND 

• Develop associations between concepts and the child's experiences. 

Q (Both of these booklets are available from Texas School for the Blind and Visually Impaired for $5 each.) 

m 

& FOR VI TEACHERS SERVING CHILDREN WITH VISUAL AND MULTIPLE IMPAIRMENTS 

Vision teachers are often asked to assist or adapt classrooms for students with visual and multiple impair- 
ments. Many VI teachers are comfortable adapting the classroom but become frustrated when asked to design 
the schedule and all of the activities for the student with the visual impairment. Teaching Students with Visual 
and Multiple Impairments: A Resource Guide by Millie Smith and Nancy Levack is a resource for classroom 
teachers and vision teachers. An excerpt (Pages 152-153) follows: 

Establishing a Schedule of Meaningful Activities 

Activities can be meaningful to students for a variety of reasons. They may value the activity because 
family, peers, and teachers value it. They may enjoy it because it relates to personal likes and interests. Or it 
may be significant only because it provides an opportunity to interact with people whose company they enjoy. 
Activities are usually more meaningful when they are a regular part of students' lives and when students 
understand the outcome of participating in an activity and value that outcome. 

In the past, many self-contained special education classrooms were designed with a combined medical and 
developmental model. A student's schedule consisted of various therapies, positionings, diaper changes, 
medications, and meals. Toys, stacking rings, puzzles, and stuffed animals were provided regardless of age. 

Today, we know that a better approach is to establish a daily schedule for a student which integrates special 
services into meaningful activities. However, special services can't be integrated until activities are estab- 
lished. Teams switching from a medical/developmental model can use inventories to generate ideas for activi- 
ties. In inventories, typical environments are listed for a given student. These might include cafeteria, class- 
room, gym, bathroom, music room, and playground. Next, at least one meaningful activity for each environ- 
ment is identified. 

18 



A sample inventory of environments and activities for a 10-year-old nonambulatory, nonspeaking student 
with low vision might look like this: 



Sample Environment/Activity Inventory 



ENVIRONMENT 


ACTIVITY 


cafeteria 


Eat breakfast and lunch. 


classroom 


Clean chalkboard using a sponge mop. 
Play bingo with classmates. 
Play cassette tapes. 
Make snack. 


gym 


Race in wheelchair relays. 
Throw basketballs in a basket. 


i bathroom 


Wash hands. 
Toilet. 


music room (with regular ed class) 


Play rhythm instrument while peers sing. 
Record and play back songs. 


playground 


Turn the rope for jump rope. 

Hit T-ball with bat and run bases with peer 

assistance. 



■3 




z 





1 



The chalkboard-cleaning activity was chosen for this student because she likes water and enjoys squeezing 
the sponge mop out in a pan of water. Typical peers also have chores. Playing cassette tapes was chosen as a 
recreation/leisure activity in order to give her a chance to learn to play her favorite music independently using 
adaptive equipment. The direct implementors of instruction are the classroom teacher and the paraprofes- 
sional. The VI teacher assists by planning modifications and adaptations and by role releasing procedures for 
teaching specific sensory skills. 

(This book is available from the Texas School for the Blind and Visually Impaired for $40.) 

If you are interested in other books and materials available through TSBVI, please contact our Curriculum 
Office by mail at 1100 West 45th St., Austin, TX 78756, phone (512) 206-9183, or visit the TSBVI website at 
<www.tsbvi.edu>. 



19 



Cerebral Palsy and Children with Vision and Hearing Loss 

By Stacy Shafer, Early Childhood Specialist 
& Kate Moss, Family Support Specialist, TSBVI, Outreach ^ 

WHAT IS CEREBRAL PALSY? 

Cerebral Palsy or CP is a condition that is mainly characterized by an inability to fully control motor func- 
tion. This may include muscle tightness or spasm, involuntary movement, and/or disturbance in gait and 
mobility. It is NOT a disease, is not communicable, and is not progressive. It is caused by damage to the brain, 
rather than muscles. This damage can occur before, during or shortly after birth. Lack of oxygen, illness, 
poisoning, and head injury are some factors that can cause cerebral palsy. 

People who have CP may also experience a range of conditions in addition to impaired motor function. 
These may include: 

• abnormal sensation and perception 

• impairment of sight, hearing, or speech 

• seizures 

• mental retardation 

• difficulties in feeding, bladder and bowel control, and breathing (because of postural difficulties) 

• skin disorders (because of pressure sores) 

• learning difficulties 

CP can range from very mild to very severe. No two people are affected in exactly the same way. Some 
children with mild CP may not be diagnosed until after they are two years old. 

There are three main types of CP: 

• Spastic which produces stiff and difficult movement 

• Athetoid which produces involuntary and uncontrolled movement 

• Ataxic which produces a disturbed sense of balance, position in space and general uncoordinated 
movement 

It is important to note that these three types of CP may also occur in various combinations. 

Physical therapists who work with children who have CP will often describe the child as having low tone 
(hypotonia), high tone (hypertonia), or fluctuating tone. Other terms you may hear them use in discussing CP 
refer to the area of the body affected by the brain damage. Problems to one side of the body are referred to as 
hemiplegia. Quadriplegia occurs when the individual has upper and low body involvement. Diplegia de- 
scribes lower body involvement and paraplegia describes upper body involvement. (Harris, 1987) 

VISION ISSUES 

"Over 40-75% of children with cerebral palsy have some form of a visual problem or impairment." (Black, 
P.D., 1980) They may have an acuity loss, field loss, oculomotor problem and/or a processing problem. These 
conditions often result in visual concentration issues and/or problems with eye-hand coordination. It is very 
important that an eye care specialist be consulted regularly for possible treatment, including glasses, eye patch- 
ing, surgery, etc. 

Acuity loss 

An acuity loss typically makes things appear blurry. Nearsightedness (myopia) and farsightedness (hypero- 
pia) are types of acuity loss caused when the image does not hit the retina correctly (refractive errors). Glasses 

20 



are prescribed to help improve refractive errors. Those of us who have an acuity loss and wear glasses know 
how much information we miss from our environment when we don't have our glasses on. Glasses are very 
important for a child who has CP and acuity loss. Glasses can greatly improve incidental learning or learning 
that takes place by observation. 

Field loss 

The field of vision is everything you can see when you look straight ahead which is normally about 180 
degrees in all directions. A field loss means that part(s) of the field is missing. Types of field losses include: 

• hemianopsia: right or left, upper or lower half of the field is missing, 

• central loss: like holding your fist up in front of your eyes, 

• scotomas: isolated spots are missing from your vision, 

• islands of vision: you can see only scattered spots, and 

• peripheral loss: you can see straight ahead but misses information from the sides 

Oculomotor problems 

An individual with CP may also experience conditions with their eye that can affect depth perception and 
smooth movements of the eye. These are called oculomotor problems and include: 

• eye turns in towards the nose (esotropia or esophoria), 

• eye turns out towards the ears (exotropia or exophoria), 

• eye turns up (hypertropia or hyperphoria), 

• eye turns down (hypotropia or hypophoria), 

• eye misalignment due to muscle imbalance (strabismus), 

• lazy eye (amblyopia) 

Processing problems ^ 

This means that the child has problems making sense of visual information. Cortical visual impairment or 
CVI causes processing problems. CVI can cause the vision to fluctuate from day to day and minute to minute. 
It can also impact depth perception and cause a field loss. 

Visual concentration and eye-hand coordination (/! 

Children with CP may also have problems with visual concentration and/or eye-hand skills. Many of the 
children expend so much energy and concentration on keeping their body upright, controlling an accurate 2 
reach, etc. they have little left over to use for visual tasks. Asking some children with CP to hold their body in O 
alignment, look at a toy and then reach for it, might be like asking you to read War and Peace and put a bicycle 
together while serving your mother-in-law high tea. We are asking the child to do too much at one time. If we 
can support and stabilize his body, he will be able to concentrate on looking and reaching. If trunk and head (/) 
control is the skill you want to work on, you may not want to use a visual toy as a motivator. As a team you 
need to consider the types of demands you are placing on the child within any given activity. 

HEARING LOSS AND LANGUAGE PROBLEMS 

"Robinson (1983) noted that 20% of children with cerebral palsy display hearing or language problems." 
(Anthony, T. 1993) Typically the hearing loss is sensorineural. Beyond that, not much research has been done 
to date on hearing loss and CP. It is important, however, that children with CP also have their hearing assessed, 
especially if they also have a visual impairment. 

Children with CP often have speech problems. This happens because the muscles that are used in produc- 
ing speech (in the tongue, throat, lungs, etc.) are impacted by the CP, a condition known as dysarthria. Their 

21 



D 

.5 



speech may be slow and slurred. Their voices may have a very nasal quality (hypemasal) if too much air comes 
through v.he nose or sound like they have a bad cold if too little air comes through the nose (hyponasal). The 
child's facial features may also seem distorted when they are speaking. A speech therapist should be consulted 
to determine if a therapeutic approach might help the child with these problems. 

Many people consider using voice output devices with individuals who have CP. Before making such a 
recommendation, it is important to thoroughly evaluate the child's hearing. His ability to use such a device will 
be impacted by how well he hears. He may also have problems hearing what the teacher says, participating in 
group discussions, or any other tasks that requires the use of hearing. If hearing and vision losses are both 
present, an educational approach for deafblindness should be used. 

LEARNING PROBLEMS 

Other problems that may impact learning for some children with CP include learning disabilities, mental 
retardation, and seizures. Good assessment should insure that these issues are appropriately addressed in 
developing the IEP and providing the necessary adaptations, modifications and related services the child needs 
to be successful. 

BENEFITS OF A TEAM APPROACH 

It is critical that everyone who works with the child share information and ask questions. The parent, 
teachers of the visually impaired and hearing impaired, occupational and physical therapists, assistive technol- 
ogy specialist, orientation and mobility specialist, ophthalmologist and audiologist, classroom teacher and 
others have vital information that is necessary to consider when building a successful program for the child. 
When the team is designing activities for the child to participate in at home or at school, here are some of 
questions you might want to ask each other: 

Z • What does the child like to do? 

C • Are there activities that pose problems because the child doesn't seem to pay attention (i.e., shift 

gaze, focus on person or object, tracking, use good eye-hand coordination)? What are these 
activities? 

% 

\A • Which position(s) is best for visual activities? Auditory activities? Hand-eye activities? 

u 

& • How do I get the child into each of these positions? What tips do you have for getting the child 

jg into these positions without hurting the child or the adult? 

% • What positions place high energy demands on the child? 

• What positions make it difficult for the child to use her vision? Hearing? What other types of 
activities can she do in those positions? 

• Will the child need any special equipment for positioning in various activities? 

• Will the child's hearing aid be adequate for the activity or should other devices such as an FM 
system be considered? Are any low vision devices needed for the activity? What about 
augmentative communication devices? 

• How will his hearing aid and/or low vision devices interface with adaptive equipment and 
augmentative communication devices? 



22 



RESOURCES ON CEREBRAL PALSY 
Organizations 

Look in your phone book for your local Cerebral Palsy Center or contact : 

United Cerebral Palsy Associations 

1660 L. St. NW, Suite 700 

Washington, DC 20036-5602 

(800) 872-5827 (voice) or (202) 776-0406 (voice) 

(202) 776-0414 (fax) 

(202) 973-7197 (TTY) 

<www.ucpa.org> 

American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) 
6300 North River Road, Suite 727 
Rosemont, IL 60018-4226 
(847) 698-1635 (voice) 
(847) 823-0536 (fax) 
Email: woppenhe@ucla.edu 
Website: <http://aacpdm.org/> 

This organization is a multidisciplinary scientific society devoted to the study of cerebral palsy and other 
childhood onset disabilities, promoting professional education for the treatment and management of these 
conditions, and improving the quality of life for people with these disabilities. 

Internet Resources 

<http://hometown.aol.com/anee/index.html> ^ 

This is a site whose webmaster has cerebral palsy. This site provides good basic information as well as 2 

links to other sites dealing with cerebral palsy. Keep scrolling down and you will find information about p 

cerebral palsy and visual impairments. 5 

CP Tutorial - The Children's Medical Center of the University of Virginia offers this wonderful tutorial for 
parents, kids, and others related to CP. Check it out at: <http://hsc.virginia.edu/cmc/tutorials/cp/cp.htm>. ^ 



Books, Papers, and Videos Z 

D 
Bobath, B., and Bobath, K. Motor Development in the Different Types of Cerebral Palsy, 1975, Publisher: 

Heineman, London. 

Z 
w 

Finnie, Nancy. Handling Your Young Cerebral Palsied Child at Home, ISBN 0-452-26658-0, Publisher: 
Penguin USA, Phone: (800) 253-6476, PB $14.95. 

Geralis, Elaine (Ed). Children With Cerebral Palsy: A Parents' Guide, 1991, ISBN 0-933149-15-8, Pub- 
lisher: Woodbine House, Phone: (800) 843-7323, PB $14.95. 

Miller, Freeman and Steven Bachrach, et al. Cerebral Palsy: A Complete Guide for Caregiving, 1995, 
ISBN 0-8018-5091-6, Publisher: Johns Hopkins University Press. Phone: (800) 537-5487, HC $35.95. 

Schleichkorn, Jay. Coping with Cerebral Palsy: Answers to Questions Parents Often Ask 2nd ed.,1993, 
ISBN 0-890-795-762, Publisher: Pro-Ed, Phone: (512) 451-3246, PB $26.00. 

23 



The Management of the Child with CP with Low Vision; an NDT Perspective ($12), a monograph from 
North Rocks Press, Royal New South Wales Institute for Deaf and Blind Children, 361-365 North Rocks 
Road, North Rocks, NSW, 2151 Australia. 

Handling and Positioning Young Children with Motor Impairments (30 minute video for $198 each) from 
Learner Managed Designs, P.O. Box 747, Lawrence, KS 66044, (800) 467-1644. 

Feeding Young Infants and Children with Special Needs (30 minute video for $198 each) from Learner 
Managed Designs, P.O. Box 747, Lawrence, KS 66044, (800) 467-1644. 

REFERENCES: 

Anthony, Tanni. Program development for young children with visual and physical disabilities. Proceed- 
ings of the Eighth International Conference on Blind and Visually Impaired Children. L. Stainton & E. 
Lechelt (Eds.). Canada, October 1993. 

Black, P.D. Ocular defects in children with cerebral palsy. British Medical Journal, No. 281, 1980 pps. 
487-488. 

Harris, S . Early intervention for children with motor handicaps. The Effectiveness of Early Intervention for 
At-Risk and Handicapped Children, Academic Press, Inc. (1987). 

Robinson, R. O. The frequency of other handicaps in children with cerebral palsy. Developmental Medicine 
and Child Neurology. No. 15, 1983. pps. 305-312. 

Cortical Visual Impairment Pediatric Visual Diagnosis Fact Sheet™ 

Reprinted with permission from Blind Babies Foundation 

DEFINITION 

Cortical Visual Impairment (CVI) is a temporary or permanent visual impairment caused by the disturbance 
of the posterior visual pathways and/or the occipital lobes of the brain. The degree of vision impairment can 
range from severe visual impairment to total blindness. The degree of neurological damage and visual impair- 
ment depends upon the time of onset, as well as the location and intensity of the insult. It is a condition that 
indicates that the visual systems of the brain do not consistently understand or interpret what the eyes see. The 
presence of CVI is not an indicator of the child's cognitive ability. 

CAUSE 

The major causes of CVI are asphyxia, perinatal hypoxia ischemia ("hypoxia": a lack of sufficient oxygen 
in the body cells or blood; "ischemia": not enough blood supply to the brain), developmental brain defects, 
head injury, hydrocephalus, and infections of the central nervous system, such as meningitis, and encephalitis. 

CHARACTERISTICS 

Initially, children with CVI appear blind. However, vision tends to improve. Therefore, Cortical Visual 
Impairment is a more appropriate term than Cortical Blindness. A great number of neurological disorders can 
cause CVI, and CVI often coexists with ocular visual loss, so the child should be seen by both a pediatric 
neurologist and a pediatric ophthalmologist. 

The diagnosis of Cortical Visual Impairment is a difficult diagnosis to make. It is diagnosed when a child 
has poor or no visual response and yet has normal pupillary reactions and a normal eye examination. The 

24 



child's eye movements are most often normal. The visual functioning will be variable. 

The result of an MRI (Magnetic Resonance Imaging) in combination with an evaluation of how the child is 
functioning visually, provide the basis for diagnosis. 

BEHAVIORAL/VISUAL CHARACTERISTICS 

Children with CVI have different abilities and needs. The presence of and type of additional handicaps 
vary. Some children have good language skills and others do not. Spatial confusion is common in children 
with CVI because of the closeness of the occipital and parietal lobes of the brain. 

Habilitation should be carefully planned. 

A full evaluation by a number of professionals is essential. The evaluation team could include: teachers (of 
the visually impaired or severely handicapped), physical therapists (PTs), occupational therapists (OTs), 
speech therapists, and orientation and mobility specialists. 

Common characteristics of visual function demonstrated by children with CVI: 

• Vision appears to be variable: sometimes on, sometimes off; changing minute by minute, day by 
day. 

• Many children with CVI may be able to use their peripheral vision more effectively than their 
central vision. 

• One third of children with CVI are photophobic, others are compulsive light gazers. 

• Color vision is generally preserved in children with CVI (color perception is represented bilaterally 
in the brain, and is less susceptible to complete elimination). 

• The vision of children with CVI has be described much like looking through a piece of Swiss 
Cheese. 

• Children may exhibit poor depth perception, influencing their ability to reach for a target. 

• Vision may be better when either the visual target or the child is moving. 

The behaviors of children with CVI reflect their adaptive response to the characteristics of their 
condition: 

• Children with CVI may experience a "crowding phenomenon" when looking at a picture: 
difficulty differentiating between background and foreground visual information. 

• Close viewing is common, to magnify the object or to reduce crowding. 

• Rapid horizontal head shaking or eye pressing is not common among children with CVI. 

• Overstimulation can result in fading behavior by the child, or in short visual attention span. 

• The ability of children with CVI to navigate through cluttered environments without bumping into 
anything could be attributed to "blindsight", a brain stem visual system. 

• Children are often able to see better when told what to look for ahead of time. 

• Children with CVI may use their peripheral vision when presented with a visual stimulus, 
appearing as if they are looking away from the target. 

25 




! 




• Some children look at an object momentarily and turn away as they reach for it. 

MYTHS 

The following statements are not true, according to current knowledge in the field: 

• Children with CVI are visually inattentive and poorly motivated. 

• All children with CVI will have cognitive deficits. 

• CVI is not a true visual impairment. 

• Children with CVI are totally blind. 

• Children whose visual cortex is damaged are Cortically Blind. 

TEACHING STRATEGIES 



A great deal of energy is needed to process information visually. The child might tire easily, when 
called upon to use his visual sense. Allow for intermittent "break" times. 

Positioning is important. Keep the child comfortable when vision use is the goal in order that "see- 
ing" is the only task. 

Head support should be provided during play or work sessions, to avoid involuntary shifting of the 
visual field. 

Try many different positions to find the one in which the child feels most secure. Infants and tod- 
dlers will demonstrate when and where they see best by their adaptive behaviors. 

i If m e child needs to use a lot of energy for fine motor tasks, work on fine motor and vision sepa- 

C L^-l rately, until integration of the modalities is possible. 

Z 

The simpler, more constant and more predictable the visual information, the better the child with 

^ • CVI is likely to deal with it. Keep toys and environment simple and uncluttered. Use books with 
J2 one clear picture on a contrasting simple background. 







Q j. ~~]~| Use familiar/real objects (bottle, bowl, plate, bath toy, diaper, cup, spoon, favorite toy) one at a time. 



171 

q I— —J Familiarity and simplicity are very important. 

C 

V) I I Since the color system is often intact, use bright fluorescent colors like red, yellow, pink, and orange. 

I 1 Colored mylar tissue seems to evoke visual responses. 











Repetition is very helpful: use the same objects and same process each time to provide familiarity 
and security for the child. Familiarity breeds response. 

Look for toys and activities that motivate the child. 

Vision is often best stimulated when paired with another sensory system. For example, auditory cues 
from the handling of mylar may help attract the child's attention. 

Introduce new and old objects via touch and verbal description. 

26 



jj I Try different lighting situations to assess optimal conditions for viewing. Try locating a light source 



behind, and/or to the side of the child. 






^ Try moving the target that you want the child to see: try different visual fields. 
^ Allow lots of time for the child to see and to respond to what is being seen. 

Q Learn to interpret each child's subtle response cues: such as changes in breathing patterns, shifts of 
gaze or body position, etc. 



"When a child with CVI needs to control his head, use his vision, and perform fine motor tasks, the effort 
can be compared to a neurologically intact adult learning to knit while walking a tightrope." 

RESOURCES 

1. "Observations on the Habilitation of Children with Cortical Visual Impairment" Groenveld, M; Jan, 
J.E.; Leader, P., Journal of Visual Impairment and Blindness, January, 1990. 

2. "Visual Behaviors and Adaptations Associated with Cortical and Ocular Impairment in Children," Jan, 
J.E.; Groenveld, M; Journal of Visual Impairment and Blindness, April 1993, American Foundation for the 
Blind. 

3. Video: "Issues in Pediatric Ophthalmology: Cortical Visual Impairment (1994)," Child Health and 
Developmental Media, Inc., 5632 Van Nuys Blvd., Suite 286, Van Nuys, CA 91401. 

4. "Cortical Visual Impairment in Children," Good, W.; Jan, J.E.; Luis, D. (1994) Surveys of Ophthalmol- 
ogy. 38:4: 351-364. 



ACKNOWLEDGMENTS 

Julie Bernas-Pierce, Editor 

Janice Polizzi 

Colette Altmann 

Barb Lee 

Dr. Creig Hoyt 

Home Counselors 

Dennak Murphy 

Dr. William Good 

Ann Silverrain 

Off to a Good Start Program 



The Pediatric Visual Diagnosis Fact Sheets are 
sponsored by the Blind Childrens Center and the 
Hilton/Perkins Program through a grant from the 
Conrad Hilton Foundation. 

Blind Babies Foundation 

1200 Gough Street 

San Francisco, California 94109 

(415)771-5464 



NOTE: Blind Babies Foundation has developed 7 Pediatric Visual Diagnosis Fact Sheets™ on the follow- 
ing topics: Cortical Visual Impairment, Retinopathy of Prematurity, Optic Nerve Hypoplasia, Albinism, Optic 
Atrophy, Retinal Diseases, and Vision Assessment. One complete set costs $10. Families can get one Fact 
Sheet free of charge upon request. The Blind Children's Center will soon have the Fact Sheets available on 
their website at <www.blindcntr.org/bbo. 



V> 



D 

8 



8 

Z 

a 

3 



z 



27 



June Usher Retreat a Success 

By Kate Moss, Family Support Specialist, TSBVI, Texas Deafblind Outreach 

Parents from around the state met in Austin this past June to share their experiences and plan for continued 
support in helping their children who have Usher Syndrome. The group was small but the experience was 
powerful, as families shared their fears and their hopes for the future. The final day of the meeting these 
families worked to develop an action plan for activities they would like to help bring about for families of 
individuals with Usher Syndrome. The goals the families established for the upcoming year are listed below. 

• Development of a newsletter to send out to all the families of children with Usher Syndrome. This 
may be a collection of family biographies and initially be featured in editions of SEE/HEAR. 
These biographies and the newsletter will be developed by the parents from the retreat and trans- 
lated into Spanish. 

• Have a Family Retreat for the parents, siblings, extended family members and children with 
Usher Syndrome. 

• Offer a workshop on orientation and mobility for the parents and teachers working with students 
who have Usher Syndrome which includes: simulation activities, opportunities to learn about 
adaptive devices, and information about O&M instruction. 

• Development of a videotape for families, including parents who have recently received the 
diagnosis and those who are further along in coming to terms with Usher Syndrome. 

Families also suggested other activities that could help promote a better understanding of Usher Syndrome 

and help individuals with Usher Syndrome. These included: a chatroom or electronic bulletin board, support 

^ groups for individuals (2 1 and older) with Usher Syndrome, presentations on Usher Syndrome at the Statewide 

2 Deaf Conference, Texas Focus, and Regional Day School Programs for the Deaf, onsite consultations, targeted 

mailouts and a support group for families. 



Q 



2 

Q Cornelia de Lange Syndrome Conference 

J/5" By Gwen Solis, Parent, San Antonio, Texas 

Q Cornelia de Lange Syndrome (CdLS) is a genetic disorder that causes mental, physical, and developmental 

Q 



</> 



delays. Each year families and professionals come together from all over the world for a weekend full of 
informative workshops, sibling activities, parental bonding and lots of food and fun! This year is the 20th 
Annual International Conference for the families of children with Cornelia de Lange Syndrome. Our confer- 
ence will be held at the beautiful Doubletree Hotel in Dallas, Texas from June 24-27, 1999. 

Each year, no matter where the conference is held, Girl Scout Troop 905/959 from Bogata, New Jersey, raise 
their own funds to come to the conference and provide loving childcare for the CdLS children, so their families 
can attend the conference and receive invaluable information. 

CdLS has its own Scientific Advisory Board. It consists of top medical professionals who specialize in 
CdLS and attend the conference each year. They range from geneticists, ophthalmologists, ENTs, gastroenter- 
ologists, psychologists, orthopedists, dentists, and more. 

This is always a memorable and important event. If you or anyone you know want to learn more about 
CdLS or the upcoming conference, please call the CdLS Foundation at (800) 223-8355. 

28 



Leber's Congenital Amaurosis Newsletter Update 

By Kit Looper, Grandmother, Canadian, Texas 

I am a grandmother of two small granddaughters with Leber's Congenital Amaurosis (LCA) and have been 
working steadily to start an LCA newsletter. The Newsletter is still a work in progress, and unfortunately, had 
to be put on hold for awhile, but things are finally coming together. Even though I haven't been able to work 
on the newsletter during this 'off time, I have 'met' some very interesting LCA parents, and found this 'network 
of families' expanding. They include among others, Janet Gresham, in Selma, Alabama, who has experience 
producing a newsletter on handicapped children, and offers her help in getting our 'show on the road' for LCA. 
Janet and I are fellow Alabamians and have established a great working internet friendship, sight unseen. 

Also, Brenda Sutherland of Ontario (Canada) contacted me, and she is working with and through The 
Hospital for Sick Children (HSC) in Toronto, to set up a registry of LCA parents in Canada. They are eager to 
contact any LCA parents in the USA we might reach through a newsletter, to give them an opportunity to join 
their registry, too. Brenda is a funny lady, and introduced me to ICQ on the internet, so we sometimes have 
animated, two-way, 'visual conversations' on screen. 

Last, but not least, it seems we are now in the fast track toward global possibilities— about half way around 
the world, to be specific. Cheryl Marley, a British citizen, lives in— are you ready-Saigon, Viet Nam, and has 
been spurred to begin her own website for Families of LCA Children. When Cheryl and I first 'met' on the 
internet through a list-serve, she was full of enthusiasm, energy, and frustration- and had a lot of questions on 
what she could do to make a difference. Eventually she found the answer— her Leber's Links webpage. I had to 
leave town for about 10 days last summer, and when I got back, Cheryl Marley had hit the World Wide Web 
bigtime. She literally taught herself how to create a website in just a few days and went online! She has had 
over 1000 hits in about three months. 



D 



B 



I include my latest email from Cheryl, and encourage you to support her efforts. And for the clockwatchers 
among you, Cheryl's time is exactly twelve hours (halfway around the clock,) from Texas (Central) time. Noon 76 
here, is Viet nam's midnight. I always email her late at night, my time, just as she is greeting the sun in Viet O 
Nam. Works out very well, as I then have email from Cheryl waiting when I get up next morning. Here is a bit 
of her personal email to me about her "Leber's Links" project: 

g 

"I am continuously working on [the webpage] and have lots of plans for additions in the near future. Please y 
publish the URL which is: <http://www.freeyellow.com/members4Aeberslinks/index.html>. Also, my email D 
address which is cheryl@hcm.vnn.vn. Here is what I usually tell people who ask about the page— Leber's d 
Links: (Leber's Congenital Amaurosis, Blindness and Visual Impairment) - A new web site set up by the parent \) 
of a young child diagnosed with the genetic eye disorder, LCA. Fast becoming the central arena for LCA (/l 
families and professionals to source and share information on the disorder, blindness and other associated 
issues. Updated regularly, lots of links to LCA articles and information, visual impairment and related web 
sites. Includes the international LCA register. " 

Cheryl has kindly asked me to be a contributor to her effort. If you have LCA in your family, and are reading 
of the Texas LCA Newsletter for the first time, please contact me so I can add your name to the mailing list. It 
will be available both on email and through the postal service. Research is proliferating on this rare genetic 
condition-LCA-and we hope to bring you the latest in the medical field, and put you in touch with other LCA 
families for support. Contact me, Kit Looper, at 810 Summit Avenue, Canadian, Texas 79014; email: 
kit@hhtx.com or kit@pan-tex.net; or call me at (806) 323-8500. 

29 



Coming Soon to a Neighborhood Near You . . . 

By Glenda Embree, Supervisor of Program Specialists, Texas Commission for the Blind 

The Texas Commission for the Blind is excited about innovative projects being pursued across the State. 
Our goal in making these grants and contracts available is to expand services to people with visual impair- 
ments of all ages through the creative efforts of nonprofit organizations. 

Several of these projects especially benefit children. Here's a sneak preview of projects being explored: 

Region XIII Education Service Center in Austin proposes a summer career exploration program for ap- 
proximately 16 students, 12 to 14 years old. These students would be introduced to a variety of jobs to famil- 
iarize them to the connection between personal interests and skills, individual transition planning, and post- 
graduate work selection. 

The Lighthouse of Houston is pursuing a summer transition program for approximately 1 6 students who are 
blind or visually impaired. The project will enable students to live in a supervised apartment setting, partici- 
pate in recreational activities, and gain vocational skills that will assist them in the transition from school to 
work. 

The River Performing and Visual Arts Center in Houston presents an after-school arts program for an 
estimated 500 students, including 75 with visual disabilities. A descriptive service for students who are 
visually impaired or blind will be provided in collaboration with Dr. Sidney Berger and the University of 
Houston Children's Theater Festival. 

A proposal from Amarillo entitled "Lifetime Independence for Everyone" will create an Independent Liv- 
ing Center for 100 or more children and their families in the Panhandle and South Plains areas. Services will 
support children who have visual impairments and their families for the purpose of maximizing full inclusion 
for children with disabilities. 

The Texas School for the Blind and Visually Impaired suggests a unique project entitled "What Families 
Need to Know." An estimated 660 family members of children who are blind or visually impaired will interact 
with each other and with blind adults in weekend (Saturday-Sunday) workshops to help them gain a new, more 
powerful vision of the options and potential for their children. Sessions for blind and visually impaired 
children and their siblings will be held separately from those held for parents. 

Access Arts Austin proposes to increase the availability of audio description services in art, entertainment, 
employment, and education settings. The project will produce training materials for video descriptors. Train- 
ing tapes would be duplicated and used throughout Texas. 

The National Federation of the Blind of Texas (NFBT) requested funds to continue Newsline services to 
lij blind Texans and additional funds to expand into Lubbock and Tyler. With the support of the Texas Commis- 
sion for the Blind, NFBT has been providing Newsline service to blind Texans for more than two years. The 
service started in Austin and Houston and then expanded to the Dallas/Fort Worth and San Antonio areas. The 
qA expansion into Lubbock and Tyler is estimated to add 750 new subscribers. It is projected that Newsline will be 
serving 1 ,900 people by the end of the first grant year and 2,700 people by the end of the second year of the two 
grants. 



i/) 



> 



i/) 



Li) Commission staff are working through details on the projects. For more information on our progress, call 

*7 Edgenie Lindquist at (512) 459-2579. 

^ 30 



TCB's Corner 

By Terrell I. Murphy, Executive Director, Texas Commission for the Blind 

Happy New Year! It may not be January 1, but it's a new school year, a new fiscal year for the Texas 
Commission for the Blind, and a new year for the See/Hear newsletter. My thanks to the editors for not only 
this opportunity to visit with you about a few exciting things that are happening at the Commission, but also for 
their hard work in producing a newsletter that pulls us all together in creating a brighter future for children who 
are blind. 

One of the most important terms buzzing around TCB these days is Texas Confidence Builders (or for you 
acronym lovers, TCB 2 ) — our way of breathing renewed life into who we are. Our job is to provide Texans 
who are blind and visually impaired with the skills, training, knowledge, and equipment they need to be confi- 
dent in their own abilities. Therefore, every service we deliver must promote a positive, can-do attitude. Every 
employee will be training hard in the coming months to make this a reality. 

That same can-do attitude from TCB 2 will be flowing over into what has become known as Opportunity 
2000, our plans for creating more comprehensive services for children with visual impairments and their fami- 
lies. In the spirit of one of my other favorite acronyms, we are using TEAM-work (Together, Each Accom- 
plishes More) to help us design a blueprint for building an even better children's program. Our staff has been 
busy meeting with Texans who are blind, their families, education professionals, advocates, consumer groups 
and national organizations since August, and I'm looking forward to sharing the results in a future issue. 

On the horizon are innovative projects coming into communities across the state as a result of grants and 
contracts approved by the Commission's Board in August. Our goal in making these funds available is to 
expand services to people with visual impairments through the creative efforts of nonprofit organizations. 
Glenda Embree shares information about some of these projects on page 30. 

The "numbers" for the year that just ended are all in as I write this, and once again our dedicated staff set 
new records or stayed at previous year's record levels. With the help of our many partners such as yourselves, 
this new year will offer many new opportunities for children who are blind. 



Superintendent's Corner 

By Phil Hatlen, Superintendent, Texas School for the Blind and Visually Impaired 

I'm pleased to begin the column in See/Hear for a couple of reasons. First, it will give me a chance to 
remind you every once in a while that the outstanding work of the Outreach Department at TSB VI is truly a 

part of the Texas School for the Blind and Visually Impaired. Since the children of many of you will not Z 

experience on-campus life at TSBVI, it must sometimes be difficult to imagine that Outreach services are pi 

really a part of the mission of this residential school. TSBVI is strongly committed to parents and children < 

having many options for school placement. It is our firm belief that, for each child, there is a best placement at JS| 
a particular time in the child's life. This school setting may change from year-to-year, and fortunate is the 

family that has options that meet the needs of children. It is also our belief that most blind and visually y& 

impaired students, including those with additional disabilities, should be educated in their local district if at all . 

possible. So, you see, with the TSBVI philosophy, it's no wonder that our Outreach Department is highly >» 

valued by all of us here on the campus. Outreach is a part of our mission. pi 



Another reason why this column pleases me is that it gives me a chance to share with you some of the new 

31 



and exciting programs and services we are developing. For example, this year we have three students on our 
campus who have already graduated from their local school district. They are taking courses and experiencing 
work in our career education program. It isn't always easy for a local district to provide a vocational education 
program that addresses the specific problems of work and the visually impaired person. TSB VI does this very 
well, and we're pleased to begin this program. Also, we are now offering certain academic courses to students 
from local districts who may benefit from taking Algebra, for example, on our campus from a teacher who 
knows both subject matter and is experienced teaching visually impaired students. Such classes may have an 
enrollment as low as four or five students, and this might also be an advantage to some students from local 
districts. Another new program called EXIT (Experiences In Transition) is now available for certain students 
during their last two years of high school. 

TSB VI is a school on the move. We continually explore ways in which we can supplement or complement 
the services available in local school districts, and we work hard to meet the educational needs of all blind and 
visually impaired students throughout Texas, either on-campus or where they live. 

Americans with Disabilities Still Face Sharp Gaps in Securing 
Jobs, Education, Transportation, and in Many Areas of Daily Life 

New Landmark Harris Survey Shows Little Improvement (Press Release) 

Editor 's Note: A recent Louis Harris poll of people with disabilities of all kinds found they continue to lag 
in employment, educational levels, and indicators of quality of life. Working age adults with disabilities are no 
more likely to be employed now than 10 years ago. Nationally, blind consumers are even less likely to be 
employed. In Texas, however, statistics from Texas Commission for the Blind indicate that legally blind work- 
ing age adults have afar higher rate of employment than the national average. 

WASHINGTON, D.C., July 23, 1998 - Americans with disabilities still face gaps in securing jobs, educa- 
tion, accessible public transportation and in many areas of daily life including recreation and worship. Those 
findings were presented in a new U.S. survey of 1,000 adults with disabilities announced today at a Washing- 
ton, D.C. news conference by the National Organization on Disability (N.O.D.). 

For disability advocates, these findings are disturbing yet motivating for public and private decision-mak- 
ers. The findings, commissioned by N.O.D in cooperation with Louis Harris & Associates, define the current 
status of persons with disabilities in American life. 

The highlights of the 1998 N.O.D./Harris Survey of Americans with Disabilities released today queried 
adults with disabilities, early this year (with a sampling error of plus or minus 4 percentage points). This 
\J) survey is the first such national poll taken by Harris in cooperation with N.O.D. since 1994, and the third 
conducted by Harris since 1986. 



JIJ Among the most startling findings about the workforce, the research exposed significant gaps between the 

^> employment rates of the working disabled versus the working non-disabled. Only 29% of disabled persons of 

i working age (18-64) work full or part-time, compared to 79% of the non-disabled population, a gap of 50 

00 percentage points. Of those with disabilities of working age who are not working, 72% say that they would 

(/) prefer to work. 

Fully a third (34%) of adults with disabilities live in households with total income of $15,000 or less, 
compared to only 12% of those without disabilities. 

32 



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Approximately one in five (20%) of adults with disabilities have not completed high school compared to 
9% of adults with no disabilities. 

Alan A. Reich, President of N.O.D. stated, "These gaps are unconscionable. America must do better!" He 
added, "At a time when the U.S. unemployment rate is at an historic low and there is a crying need for workers, 
it is astounding to learn that the employment gap remains so wide. As the survey shows, over 72% of people 
with disabilities out of the workforce want to work and contribute to the economy. America must remove 
attitudinal and physical barriers in the workplace and in all other areas of life." 

Humphrey Taylor, Chairman of Louis Harris & Associates, commented, "The purpose of this research is not 
just to measure the gaps in key life areas between people with and without disabilities, but to provide informa- 
tion to help close them. I anticipate that the results will be used by people both inside and outside the disability 
community, with the media, with corporate America, legislators and state and federal administrators." 



This survey is rich with information stemming from the answers to 145 questions on life activities consid- 
ered most important to people with disabilities. Other findings include: 

• Only one-third (33%) of adults with disabilities are very satisfied with life in general, compared to 
61% of the non-disabled population. 

• Only seven out of ten (69%) adults with disabilities socialize with close friends, relatives or neigh- 
bors at least once a week, compared to more than eight out of ten (84%) among the non-disabled, 
a gap of 15 percentage points. 

• About a third (33%) of adults with disabilities go to a restaurant at least once a week, compared to 
six out often (60%) of those without disabilities, a gap of 27 percentage points. 

• Inadequate transportation is identified as a problem by 30% of adults with disabilities. However, 
only 17% of non-disabled adults consider daily transportation a problem in any way, representing 
a gap of 13 percentage points. 

What can Americans do to close these participation gaps? According to Reich, "A lot. Each of us can help 
eliminate the gaps in participation by finally focusing on the abilities not disabilities of every American." 

EMPLOYMENT 

Employers - in business, government, public agencies, community institutions and groups - all can examine 
their practices and develop strategies for seeking out and hiring people with disabilities. Businesses must and 
can implement Americans with Disabilities Act requirements for accommodations in the workplace for people 
with disabilities, and at reasonable cost. Recent business studies show, it requires on average less than $300 to 
accommodate a worker with a disability. Home based employment and other forms of workplace flexibility 
are beneficial to many workers, including the disabled. From working parents to people with disabilities, 
many people are taking advantage of technology advances that allow them to telecommute and still play an 
active role in filling the nation's growing job vacancies. Disability awareness and accessibility is good busi- 
ness. Consumers prefer to deal with businesses that address their needs. The 54 million Americans with [fi 
disabilities are a prime consumer market actively courted by companies who can meet their needs. Use an 
untapped pool of talent. People with disabilities can contribute innovative and resourceful thinking to the 
collective knowledge of their workplaces and communities, because they face unique external challenges as > 
they negotiate the physical world around them, as well an internal challenges to their identity as individuals 
and as members of society. 



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COMMUNITIES 

Community groups, religious organizations, professional and trade organizations, labor unions and service 
organizations can examine their practices and adopt plans for including disabled persons. Elected local leaders 
and officials can ensure that their communities are in full compliance with the law - the Americans with 
Disabilities Act, the Rehabilitation Act, the Motor Voter Law, and the Individuals with Disabilities Education 
Act. Recreational, cultural and sports groups and institutions should ensure full accessibility and encourage 
participation of disabled persons. The recent debate about Casey Martin's participation in the PGA tours 
highlights the bias people with disabilities face in America today. Recognize people with disabilities as posi- 
tive contributors to community diversity. People with disabilities, the nation's largest minority, often are not 
included as a group in corporate and community planning, although they impact diversity at least as much as 
other minority groups. Moreover the disability population is highly diverse within itself, and, unlike other 
minority groups anyone can join in an instant. 

INDIVIDUALS 

Those of us with disabilities, family members and friends can take the lead by providing guidance to others 
in encouraging full participation of people with disabilities in community life. Active involvement by people 
with disabilities in educational and civic life on all levels expands our awareness of how those outside the 
mainstream live; this allows our communities to be more thoughtfully inclusive of all differences. Americans 
must extend themselves to their fellow citizens with disabilities, and overcome their fears of the unknown. We 
need to become more aware of what people with disabilities can contribute; we need to respect their abilities. 

ACROSS THE NATION 

The media can ensure that people with disabilities are portrayed fairly as individuals engaging in public and 
private life. Negative portrayals of people with disabilities in movies, such as the recent "There's Something 
About Mary", TV shows and so on, are inaccurate and should not be permitted. 

As more people with disabilities participate in the various aspects of American life, the general population 
will become more informed, and they will abandon their stereotypes based on misconceptions. Attitudes will 
improve. The full participation of people with disabilities in an increasingly diverse American population 
overall will result. Just because we have enacted the ADA does not mean that we can rely on it to change 
attitudes and perceptions about America's disabled. By valuing each individual for his or her abilities allows 
our nation to benefit globally by demonstrating democracy at its best. 

The National Organization on Disability promotes the full and equal participation of America's 54 million 

men, women and children with disabilities in all aspects of life. Founded in 1982, N.O.D. is the only national 

network organization concerned with all disabilities, all age groups and all disability issues. N.O.D. receives 

:,-. no government funds and is supported entirely by private donations from individuals, corporations and founda- 

$ tions. For more information, contact N.O.D. at (202) 293-5960, TDD (202) 293-5968. 

WWW Resources on Hearing Loss 

<http://www.earinfo.com> 

Want to learn how to read an audiogram? Go to this web page to do this as well as get information about 
buying hearing aids. 

<http://www.gwha.com/projects/hear/link/linkbody.html> 

This web page provides links to a wide variety of sites dealing with hearing loss. Take a virtual tour of the 
ear, learn about cochlear implants, or get the latest on ASL. This large, comprehensive site can take you there! 

34 



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TSBVI Invites You to the Family Discussion Room 

By Kate Moss, Family Support Specialist, TSBVI, Deafblind Outreach 

For a long time now, families have contacted me about wanting to connect with other families. I've heard 
from many parents who want to talk with another parent whose child has a particular syndrome or condition. 
Perhaps their son or daughter wants to have a pen pal or they are grandparents wanting to meet other grandpar- 
ents. Workshops and family retreats are great places for these connections to be made. I also know that some 
of the SEE/HEAR readers have connected through articles in the newsletter. The new TSBVI Family Discus- 
sion Room provides one more option for making connections. 

More and more families are getting Internet access at home, at work, or at school. Some folks are even 
using their public libraries to "surf the net." Many students who are visually impaired or deafblind are learning 
the computer skills they need to access this new resource in school. So, we decided to add a new space on the 
TSBVI website for family members to connect with each other. This is an electronic bulletin board, not a chat 
room. That means that you can post messages for other people to read, and they can respond to you if they like. 
If you want to have a more direct conversation you can exchange your email address with them for private 
conversations at a later time. Eventually, if this service is popular, we may have additional boards for specific 
groups. Some that have been proposed by parents include a board for Usher Syndrome, Leber's Congenital 
Amaurosis, Siblings, and Teens with Visual Impairments or Deafblindness. We are open to your ideas and 
suggestions. Let us hear from you. 

The Family Discussion Room should be up and running by December, 1998, just in time for the Christmas 
holidays. Please drop in for a visit and post a message. Simple go to the TSBVI website at <www.tsbvi.edu>, 
click on "Family Discussion Room", and follow the directions. 



Mentor Training Update 

By Ruth Ann Marsh, Mentor Coordinator, TSBVI, Outreach 

The next two mentor training sessions will be attached to the professional conferences listed below. Now 
mentors won't have to choose between a conference and mentor training, or ask permission to take yet another 
trip away from students. Here are the dates: 

Mentor training Conference attached to Location 

January 13-14 "Helen" January 15-16 Austin, TX 

April 25 - 26 TAER April 22 - 24 Austin, TX 

The Mentor Program will pay for travel to and from the training site. Food and lodging for the mentor JJ 
training days, including the night prior to the first day of training, will also be provided. Mentors wishing to p-j 
attend a conference will be responsible for registration fees and other conference related expenses. ^ 

The first day of training, Dr. Leslie Huling, an expert in mentoring from Southwest Texas State University, l/J 

will speak generally about being a mentor. On the second day, the trainees will be divided into two groups, VI fo 

mentors and O&M mentors. Each group will have a well-known expert facilitate discussion about the specif- ' 

ics of being a mentor for a new O&M or VI professional. K, 

If you are an experienced O&M specialist or VI teacher in Texas, and are interested in becoming a mentor ^ 
for an O&M specialist or VI teacher in training, please call Ruth Ann Marsh, Mentor Coordinator at (5 1 2) 206- < 

9203 or send an email to marsh ra@tsbl.tsbvi.edu. vi 

35 



Bits and Pieces from Here and There 



AER 



Congratulations to Billy Brookshire. A Senior Human Resource Development Specialist for the Texas 
Commission for the Blind, Billy has been named President-elect for AER. AER is a national organization for 
people involved in education and rehabilitation of people with visual impairments. Billy has been employed at 
TCB for over 20 years! (Funny, he doesn't act that old!) 

Congratulations to Robbie Blaha with the Texas Deafblind Outreach at TSBVI. She was awarded an AER 
Division 3 (Multiple Disabilities and Deafblind) Outstanding Practice Award. 

AVIT 

AVIT, The Alliance of and for Visually Impaired Texans, is an interorganizational coalition committed to 
speak on behalf of Texas' children and adults with visual impairments. With regards to people with visual 
impairments, AVIT works for: 

• The advancement and protection of human and civil rights, 

• The improvement of social welfare and economic conditions, 

• The education of the public with respect to special concerns, and 

• The promotion of interorganizational cooperation and support on issues. 

More information may be heard at a "listen only" line at (800) 394-0666. AVIT will hold its next meeting 
on November 18, 1998 at Criss Cole Rehabilitation Center in Austin. The purpose of this meeting will be to 
develop a legislative platform. Visit the AVIT website at <http://www.christal-vision.eom//AVIT/>. 

KORAN 

The Arizona Instructional Resource Center at the Foundation for Blind Children in Phoenix announces the 
sale of a braille transcription of an English translation of The Holy Koran . The 7 volumes are available for 
purchase by calling (602) 331-1470. 

Katlyn's Hope, Inc. 

By Shari Willis 

I am Shari Willis, president of Katlyn's Hope, Inc. Following the death of our deafblind daughter, my 
husband and I started this organization. We give scholarships to deafblind children. You may contact us at this 
toll free number: (877) 677-HOPE (for parents only please). The phone number for others to call is: (316) 
326-61 18. Our e-mail address is khope@idir.net and our snail-mail address is Katlyn's Hope, Inc., 303 South 
Elm, Wellington, KS 67152. We will be getting a Web site very soon, hopefully by November 1st. 

On November 15, 1998, CBS is airing a program, "Monday after the Miracle" starring Roma Downey. It is 

the story of Anne Sullivan and Helen Keller in Helen's adult years. The movie was filmed in Lawrence, 

Kansas, and as a result, we had the great fortune of hooking up with the producer. She invited us and several 

deafblind teenagers to the set, and let them tour the place and enjoy some of the filming. As a result of our 

meetings with the producer, she has arranged for a Public Service Announcement to air following the program. 

It is only 10 seconds in length, but it will give all pertinent Katlyn's Hope information so that families can 

contact us. We are really excited! The premiere for the movie was wonderful, the scholarship recipients were 

incredible, and we gave a 13 year-old boy (and his family), whose dream is to see the Statue of Liberty before 

he loses his remaining vision, a surprise trip to New York City for Christmas. "Monday After the Miracle" will 

air November 15th. Be sure to tune in! 

36 



CLASSIFIED 



Don't wait! Send your new classifieds to Jim Durkel now, so he can update the 

Statewide Staff Development Calendar posted on TSBVI's website at <www.tsbvi.edu>. 

Mail or email your ads to 1 100 West 45th Street, Austin, TX 78756, or durkelj@tsbl.tsbvi.edu. 



Through Your Child's Eyes 

Have you ever wondered how your child "sees" the world? Have you ever considered what a world 
with little or no sight might be like? If these questions seem important to you, then Through Your 
Child's Eyes was designed with you in mind. At this workshop you will have the opportunity to: 

meet other parents of children with visual impairments and deafblindness 

learn how the eye works and how your child's visual impairment impacts his vision 

participate in activities that simulate visual impairments 

learn about the resources available to you and your child 

learn about advocating for quality programming for your child 

meet adults who have visual impairments 

Target audience: Parents of young or recently diagnosed children with visual impairments, including 
multiple impairments. This workshop has been scheduled in the following locations: 



San Antonio, TX 

November 6-8, 1998 

Contact: Judy Wright at TCB 

(210)732-9751 



Bryan/College Station, TX 

February 20-21, 1999 

Contact: Bettye Giordano or Alice Thomas 

at TCB (409) 696-9610 



I 



This workshop is also planned for the Winter/Spring of 1999 in Victoria and Abilene, Texas. 



Cornelia de Lange Syndrome 

20th Annual Conference 

for Families 

June 24-27, 1999 

Doubletree Hotel 

Dallas, Texas 

For more information contact: 

CdLS Foundation 

(800) 223-8355 



CHARGE into the New Millennium! 

CHARGE Syndrome 
Conference 

July 23-25, 1999 
Houston, TX 

Contact: 
(800) 442-7604 (for families only) 
(573) 499-4694 (for professionals) 

or 
mnorbury@mail.coin.missouri.edu 



37 



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Helen Called Her "Teacher" 

January 15-16, 1999 

Texas School for the Blind 

and Visually Impaired 

Austin, TX 

This workshop is for new and experienced 
VI teachers, O&M specialists, and parapro- 
fessionals working with children who have 
visual impairments. Tentatively, we will fo- 
cus on issues related to preparing our students 
for life after graduation. 

Contact: Jim Durkel, TSBVI 

(512) 206-9270 or 

durkelj@tsbl.tsbvi.edu 



Statewide Conference on 

Community Services and 

Supports for All Texans 

Sponsored by: 

Texas Respite Resource Network 

and the 

Coalition of Texans with Disabilities / 

Personal Assistance Services Task Force 

December 13-16 

Hyatt Regency on the Riverwalk 

San Antonio, TX 

This conference will provide up-to-date in- 
formation about statewide issues in commu- 
nity supports and how you can impact legisla- 
tive action, as well as provide an opportunity 
for networking. Family and consumer sti- 
pends may be available. 

Contact: Texas Respite Resource Network 
(210) 704-2794 or diana_cerna@srhcc.org 



November 1 1 
Beginning Abacus 

Location: Region XII ESC, Waco, TX 
Target audience: Teachers for students with visual 
impairments 

Description: This workshop will focus on introduc- 
ing teachers to using and teaching the abacus. This is 
a beginning level workshop. 
Presenters: Debra Sewell 
Contact: Tina Herzberg, Region XII ESC 
(254) 666-0707, ext. 260 

November 16-18 
Every Move Counts 

Location: Region XX ESC, San Antonio, TX 
Target audience: Professionals working with stu- 
dents with profound disabilities 
Description: This workshop covers assessment and 
intervention strategies for students with profound 
disabilities. 

Presenters: Jane Korsten 
Contact: Deborah Thompson, Region XX ESC 
(210) 370-5433 

November 18 

Before the Technology Assessment 

Location: Region X ESC, Richardson, TX 
Target Audience: Teachers for the visual impaired 
serving students with either no other impairments, 
or with multiple impairments. 
Description: This session will give teachers some 
resources to try before asking their technology teams 
to conduct a full assessment on a student. 
Presenter: Sharon Nichols, TSBVI, Austin, TX 
Contact: Kitra Gray, Reg. X ESC (972) 348-1580 

November 19-20 

Tactile Communication Systems for 

Students with Sensory Impairments 

Location: Region IV ESC, Houston, TX 
Presenters: Ann Rash and Craig Axelrod, TSBVI 
Contact: Cecilia Robinson, Region IV ESC 
(713)744-6368 

December 9 

Tactile Graphics and TAAS 

Location: Region IV ESC, Houston, TX 

Presenters: Diane Spence, Irene Rojas, 

Ana May Hernandez 

Contact: Cecilia Robinson, Region IV ESC 

(713)744-6368 



38 



December 1 1 

A New Era of Braille Instruction 

Location: Region XI ESC, Ft. Worth, TX 

Target audience: Teachers for the visually impaired 

Description: This workshop will discuss relevant 

educational factors for selecting a primary learning 

media, braille readiness activities, and activities to 

minimize rubbing, scrubbing, and letter reversal. 

Presenters: Sally Mangold, San Francisco, CA 

Contact: Olga Uriegas, Region XI ESC 

(817)625-5311 

Jan. 19, Feb. 16, 

Mar. 16, April 20, May 11 

VIISA: Vision Impaired In-Service in America 

Location: Region XVIII ESC, Midland, TX 
Target audience: Professionals working with stu- 
dents with visual impairments, birth to 3 years of age 
Description: This workshop will help participants 
gain skills in understanding the unique needs of 
infants and toddlers who are visually impaired, and 
their families. 

Contact: Miriam Powell, Region XVIII ESC 
(915) 563-2380 or mpowell@escl8.net 

January 26 

Ecological Evaluations: Practical Solutions to 

Complex Concerns for Students with Visual 

Impairments 

Location: Region X ESC, Richardson, TX 

Presenter: Karen Wolffe, Austin, TX 

Contact: Kitra Gray, Region X ESC (972) 348-1580 

January 27 

Career Education for Students with Visual Im- 
pairments 

Location: Region X ESC, Richardson, TX 

Presenter: Karen Wolffe, Austin, TX 

Contact: Kitra Gray, Region X ESC (972) 348-1580 

January 28-29, and February 25 
Every Move Counts 

Location: Region XII ESC, Waco, TX 
Target audience: Professionals working with stu- 
dents with profound disabilities 
Description: This workshop covers assessment and 
intervention strategies for students with profound 
disabilities. 

Presenters: Jane Korsten 
Contact: Tina Herzberg, Region XII ESC 
(254) 666-0707, ext. 260 



January 28-29 Part 1 
February 25-26 Part 2 
March 29-30 Part 3 

INSITE Training: A Home-Based Model For 
Infants, Toddlers, and Preschoolers Who Are 
Multiply Disabled Sensory Impaired 
Location: Region XI ESC, Ft. Worth, TX 
Target Audience: School and ECI professionals 
working with families who have children, birth to 5 
years, with multiple impairments, including an 
impairment in at least one of the sensory systems. 
Description: This is a 6-day training divided into 3 
parts. Attendance at all 6 days is required. Topics 
include information on vision loss, hearing loss, 
communication development, motor development, 
active learning, and working with families. 
Contact: Olga Ureigas, Region XI ESC 
(817)625-5311 



For a complete and up-to-date 
listing of workshops and 
conferences, visit the TSBVI website at 
<www.tsbvi.edu>. 



39 



Medicaid Expansion for Teens 

As of July 1998, more Texas teenagers can qualify 
for Medicaid for their health care. Medicaid changed 
the family income limits for teens. Teenageers who 
are under 19 years old may now qualify for Medicaid 
even if they did not qualify before. 

Last year, Congress passed legislation which helps 
states provide health care for children who are unin- 
sured and whose families have low incomes. Each 
state develops its own children's health insurance 
plan. The first phase of the the Texas plan to cover 
more children who are uninsured is an expansion of 
Medicaid for older teens, 15-18 years old, whose fam- 
ily income is less than 100% of the federal poverty 
limits. Teens younger than 15 are currently eligible at 
this family income level. Families must still meet 
other Medicaid requirements, such as asset limits. 

Please help teenagers take advantage of this oppor- 
tunity to get health coverage (medical and dental 
check-ups, equipment and supplies, prescriptions, 
etc.). Contact your local Texas Department of Human 
Services (TDHS) office to learn more about the Med- 
icaid Expansion for Teens. 



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published quarterly: February, May, August, and November 

Contributions to the newsletter are always welcome. 
Articles can be mailed or emailed to section editors at: 

TSBVI Outreach 
1100 West 45th St. 
Austin, TX 78756 

FAMILY - Jean Robinson (512) 206-9418; robinsonJ@tsbl.tsbvi.edu 

PROGRAMMING - Ann Rash (512) 206-9269; rash_a@tsbl.tsbvi.edu 

SYNDROMES/CONDITIONS - Gigi Newton (512) 206-9272; newton_g@tsbl.tsbvi.edu 

NEWS 8. VIEWS - Jim Durkel (512) 206-9270; durkelj@tsbl.tsbvi.edu 

Deadlines for articles are: 

December 2nd for the February edition 

March 3rd for the May edition 

June 3rd for the August edition 

September 3rd for the November edition 

Editor in Chief - Kate Moss (512) 206-9224; moss_k@tsbl.tsbvi.edu 
Layout Editor - Craig Axelrod (512) 206-9435; axelrod_c@tsbl.tsbvi.edu 
Production Editor - Berta Green (512) 206-9314; green_b@tsbl.tsbvi.edu 
TCB Editor - Edgenie Lindquist (512) 459-2579; edgeniel@tcb.state.tx.us 

The audio version of SEE/HEAR is provided by 
Recording for the Blind and Dyslexic, Austin, TX. 

SEE/HEAR is available in Spanish and English on TSBVI's website at <www.tsbvi.edu>. 

If you no longer wish to receive this newsletter, please call (512) 206-9314. 



The Outreach Programs are funded in part by IDEA-B Discretionary, IDEA-B Formula, and IDEA-C Federal grants. Federal monies provide 73% of ihe total. Federal funds are 
through the Texas Education Agency, Division of Special Education, to the Texas School for the Blind and Visually Impaired. Texas School for the Blind and Visually Impair 
discriminate on the basis of race, color, national origin, sex, religion, age or disability in employment or the provision of services. 



administered 
Impaired does not 



Texas School for the Blind and Visually Impaired 
Outreach Department 
1100 West 45th street 
Austin, Texas 78756 



NON-PROFIT ORG. 
U S . POSTAGE PAID 
AUSTIN, TEXAS 
PERMIT NO. 467 



CATHY JOHNSON 
KENTUCKY SCHOOL F/T BLIND 
1867 FRANKFORT AVE. 
LOUISVILLE, KY 40206 




A QUARTERLY NEWSLETTER ABOUT VISUAL IMPAIRMENTS AND DEAFBLINDNESS FOR FAMILIES AND PROFESSIONALS 
A collaborative effort of the Texas School for the Blind and Visually Impaired and Texas Commission for the Blind 



Fall 1999 



\ 



Volume 4, No. 4 



Table of Contents 

Kate's Comer 1 

FAMILY 

"Tuff ' Love or Raising Laurie 2 

Letter to Laurie 5 

Communicating with Bruno 6 

Family Finds Answers at CHARGE Conference 7 

Dear God, Please Take Away My Energy - It's Too Hard to Handle 9 

SYNDROMES/CONDITIONS 

Parenting the Child with ADHD: Lessons in Humility & Courage 12 

PROGRAMMING 

Learning to Communicate: Strategies for Developing Communication with Infants Whose Multiple Disabilities 

Include Visual Impairment and Hearing Loss 17 

Ultraviolet A, Blue Light and Children 24 

Visually Impaired Go to Camp - Students Learn About the Sea and a Lot About Independence 26 

NEWS &.VIEWS 

TSB VI Short Courses: A New Service Delivery Model 28 

Life's Continuing Education Courses 29 

New Guidelines Will Assist States 30 

The Prospector and Goal Mine 31 

Free and Appropriate Public Education (5th Edition) 32 

Secrets 33 

Funding Assistive Technology 34 

The SURE Project 35 

Classified 36 



Kate's Corner 

Outreach is pleased to welcome a new VI Outreach member, Eva Lavigne formerly from Lubbock. Eva has spent 1 
years as a teacher of the visually impaired with the Lubbock Independent School District. Eva, we are extremely glad you 
decided to join us. Eva will be working in ESC Regions 5, 6, 9, 14, 1 6, and 17. 

It's a brand new year for Outreach, and we are already as busy as we can be. Deaf-Blind Outreach hosts the Annual 
Intervener meeting here in Austin that will include a special presentation by Dr. Jan van Dijk of the Netherlands for interveners 
and their supervising teachers. Joining them for this event and some informal meeting time of their own will be the new 
Regional Deaf-Blind Specialists from the education service centers, and the new DBMAT Regional Coordinators. This 
meeting takes place November 7-9 following the ESC Region 1 1 van Dijk workshop on the 3rd and 4th. 

One of our primary focuses for both Deaf-Blind and Visually Impaired Outreach is to help develop supports at a 
regional level. We are working in collaboration with The Three Low Incidence Disabilities Decentralized Project at 

Kate's Corner - continued on page 2 




Kate's Corner - continued from page 1 

Region 3 ESC to pilot a process in several regions that will develop stakeholder groups which examine and address the 
needs of individuals with deafblindness. We are also lending our support to the Deaf-Blind Multihandicapped Asso- 
ciation of Texas (DBMAT) to train Regional Coordinators for that organization in all of the education service center 
areas. VI Outreach is working with NAPVI and other parent support groups on initiatives that include expanding the 
number of support groups for families regionally and developing a Spanish-speaking Family Network. 

Of course, we see 1 999 - 2000 as a time of continued training for parents and professionals. Texas Focus 2000, Helen 
Called Her Teacher, and the Second Annual Usher Syndrome Family Retreat are already being planned. Watch the Classi- 
fied section or visit the TSB VI website to stay up-to-date on the plans for these and other events. We will also continue to 
offer workshops such as Through Your Child's Eyes, topical workshops (on braille instruction, communication, etc.), and 
activities such as the INSITE Curriculum Training and Quality Program for Visually Impaired (QPVT) in collaboration with the 
education service centers and Texas Commission for the Blind. Our Technology Specialist, Sharon Nichols has developed 
apacket of materials to assist local districts in completing technology assessments. In addition, she offers two days of onsite 
training to assist a teacher and student with the new device or software program borrowed from the TSB VI Technology Loan 
Program. Onsite consultations remain on the menu as another training option available to families and professionals. 

Through the VIP program over 100 vision professionals have been trained in Texas over the past two years, and we 
continue to collaborate with Universities and ESCs to train more professionals in the area of vision and orientation and 
mobility through this program. Through the Mentor Program 1 39 O&M Specialist and VI teachers have been approved as 
mentors with 36 applicants waiting to be approved. Connecting with these mentors are 1 1 5 O&M specialists-in-training and 
VI teachers-in-training, and an additional 64 individuals waiting to receive a mentor. Of course, APH Quota materials and the 
TEA VI Registry are still being ably administered by Nick Necaise. 

Please keep reading SEE/HEAR to stay informed about the many wonderful activities that are occurring in Texas. As 
aresult of this excellent collaboration of parents and professional, 1999 - 2000 has the makings of a very good year. 

"Tuff" Love or Raising Laurie 

By Annie Wade, Parent, Tulia, Texas 

Editor's note: Many of you will remember Annie from the video "Power of the Heart". This 1987 video 
is often shown to university classes to demonstrate effective ways for parents and service providers to work 
together. Recently, a professor from Ball State University in Indiana contacted me to ask, "What happened to 
Laurie and her family?" I connected her with Annie, who is now a TCB children's caseworker in Amarillo. 
Then it dawned on me that perhaps others would want to know what happened to Laurie; so I nagged Annie 
until she agreed to write an article. Annie is too modest to tell many people that she was the first editor of this 

newsletter when it was still called P.S. News!!!, and one of the first Outreach 
Family Support Specialists! Thanks, Annie (and husband, Garland) for tak- 
ing the time and emotional energy to once again to share your life. 

Laurie is flying home from Dallas for a long weekend. I arrive at the air 
terminal almost an hour early to wait for her plane. Mental pictures race 
through my mind, and I shed tears of joy at how far she has come since the 
day she was born almost 32 years ago, deafblind multihandicapped. I can 
visualize that sweet baby lying on the carpet, flicking at the sun's rays filtered 
through the living room window, a victim of an awful circumstance. It was so 
easy to love her in that contented "world of her own" knowing little, com- 
pletely dependent, and caring less. We pondered. Is this all there is? Can 
there be more? If so, how much more? 
2 




I think of the surgeries when I watched, as my baby had to be restrained to prevent injuries to her eyes. Her dad 
and I rocked a million miles with her arms in restraints being held under our arms, because she could wiggle out of the 
restraints. Then, there was eating. It took years of consistendy presenting foods and cleaning up messes, manipulating, 
self-feeding and chewing, frustration on the part of mom and Laurie, therapists and teachers. Eventually, Laurie 
learned to feed herself and eat a variety of healthy foods. Of course toilet training was really fun. There were two years 
of putting Laurie on the potty-chair every 30 minutes and charting every occurrence. The toilet chair went in the back 
seat of the car and even on the airplane to a conference (which we borrowed money to attend) so Laurie would have 
"her" chair. Consistency was the name of the game. Laurie really didn't want to sit on the potty-chair. She tantrummed 
and beat her head. Her dad had to leave the house. It hurt to hear her screaming and to know what she was doing. 

It hurt to teach Laurie, both physically and emotionally. She wore orthopedic shoes and kicked the shins of the 
person sitting across the table when learning table tasks. Laurie had no desire to learn. She preferred to be the victim, 
lie on the floor or the bed, and engage in self-stimulation behaviors. This was not acceptable to team members. A very 
wise physical therapist, one of the first professionals who worked with Laurie told me that Laurie would never learn 
until she exhibited resistance. This was in reference to physical development because Laurie just wouldn't try to roll 
over, crawl, stand up. . .or anything - she would just go limp. However, I soon learned that exhibiting resistance was a 
prerequisite to all of her progress. At the same time, Laurie's occupational therapist also provided very wise direction. 
She counseled us that Laurie's family should be informed (learn as much as they could) and that it was imperative that 
we follow through at home with everything she was learning in therapy and at school. Then, there was the teacher who 
never gave up, and would never let us give up. Every member of the family was involved. This meant we couldn't just 
sit around and enjoy our sweet deafblind daughter. If we wanted her to realize her fullest potential, we had to be willing 
to "sacrifice our time and energies" to encourage her to do things she didn't want to do. She needed to wear her 
hearing aids. She needed to wear her glasses. She threw them off, but they were put right back on. 

Some of the things Laurie most hated to do during school years have brought her the most fulfillment. The most 
important has been the development of communication which began with a sound motor base and evolved into the 
calendar system, incorporating experience stories into planned every day activities. This might include fun things, but 
also included work. Now, Laurie relies on her calendar to plan trips home, to visit her sister in Spicewood or her 
brother in Colorado, or attend Camp Summit. (She has been attending every year since it began and starts asking 
about it right after Christmas.) Although Laurie doesn't require the calendar as much now because she understands 
more sign language, upcoming activities still go on the calendar so she won't pester people so much. It may also be 
used to anticipate activities such as doctors visits. I must confess that I hated doing the calendar as much as Laurie did 
for a long time. It was disruptive to go to the calendar before we could do anything, but now I am glad we did. 

Perhaps the "tuffest" thing we faced was helping Laurie grieve the loss of her dearest friend and sweetheart. Yes, 
a child with disabilities does go through a grieving process. Brad was a schoolmate with similar disabilities. She had 
been with Brad as his health declined and when he died, we had to be "tuff to be sure Laurie understood and could 
deal with her sadness and go on with her life. This meant involving Laurie in the events that occurred. She was told 
immediately. We took her to buy flowers and to visit Brad as he lay in state. She patted him and signed his name over 
and over again. Laurie attended the funeral and quietly shed her tears in back of the seeing/hearing crowd. At her 
request she has continued to make trips to take flowers to Brad's grave and "talk" to him in sign language. Although 
finding it difficult, we continued to maintain consistency in our expectations while giving Laurie the time to grieve. It was 
a precarious balancing act, but she needed to learn that life does go on. 

The airline has just announced that Laurie's plane is approaching the runway and will soon be at the gate. As I 
reflect how Laurie was able to arrive at this station in her life, I think of all of the people who gave so much of 
themselves in helping her reach this destination. Many of you would recognize the people if I had enough room to list 
them all. The list includes, professionals, friends, and of most importance - her family. Laurie was so fortunate to have 
the best. We all learned so much and without any one person in this network, Laurie would not be who she is. They 

3 






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should all be very proud. Perhaps you would like to know why I speak with so much pride. Well, let me tell you. We 
always worked as a team. The team was made up of people who, I believe, genuinely loved Laurie and believed in her. 
As a result, there were realistic expectations placed on Laurie that were never compromised - discussed - yes, 
adjusted - yes, reviewed - yes, deleted -yes, discussed - yes, and the process repeated itself again and again. 
Through this process Laurie learned and progressed; found plateaus; failed and survived; then learned some more. 

The plane has landed and is approaching the gate now. I think about last night when I called Betty (the supervisor 
of the deafblind group home at the Autistic Treatment Center in Dallas) to check to see if everything regarding this trip 
was on schedule. Betty told me how excited Laurie has been since we planned this visit home about three weeks ago. 
How wonderful it is that Laurie has become such an independent, confident woman who enjoys so many activities, so 
many things and her relationships with so many people. This is not to say that Laurie is "normal" - far from it! She still 
needs full time supervision at home and at work. ATC in Dallas has been Laurie's home for 6 years - and I have to say, 
these six years have been great. 

The door to the passenger tunnel is open and I see Laurie hurriedly dragging her wheeled luggage toward me. We 
meet, have a long hug. . . some patting and a few signs about spaghetti or pizza for lunch. Hand in hand we leave the 
gate with Laurie in the lead. 

As I look back over the last 30 years, I realize that many things we did fit into the category of "tuff love. There 
are those who would say we were cruel and that we shouldn't have made Laurie sit on the potty chair, or forced her to 
eat things she didn't want, or made her do therapy at home. There are those who will say that we shouldn't have 
required so much of Laurie and her siblings. There are those who did not agree with the philosophy we followed in 
raising Laurie. In answer, permit me to relate something that was recently shared with me by those who know her so 
well now. I was told that Laurie is the gentlest and most compassionate person one could ever meet. Of all the things 
that could be said of her, this is the best. And, this can only be said of Laurie because of those who were willing to 
practice "tuff' love while helping us raise our Laurie. 

Through the years I have worked with families of children with deafblindness, and families of children with visual 
impairments or other disabilities. My observations are that the most successful and happiest children are the ones that 
had realistic expectations placed on them by staff and family. They are the children whose families exhibited self- 
discipline, calmness of spirit, stubbornness, and consistency in working with their child while relying on an inner strength 
from the Heavens. The only word for this is "tuff love. 

Finally, consider this: Practicing "tuff love is much tougher on the caregiver than the child. To provide consis- 
tency and expectations you must also endure consistency and expectations. You may have completed preparations to 
go to a friend's party, when your child decides to "do his/her own thing". If you stop to attend to your child's needs, 
you will be delayed or even prevented from going out altogether. You can stay and properly attend to the situation, and 
help your child grow or you can give in to your natural desire and go to the party anyway. However, if the latter choice 
occurs too often, your child may never learn. 

Furthermore, never ask or expect anything of a professional that you are not willing to do yourself. Sure, they get 
paid. However, they can only work very hard toward a goal and do all they can with your child during the session or 
school day. If you are not willing to observe and follow through at home with the goals you have set for your child, he/ 
she will likely never accomplish them. 

Although there were times when the sacrifice seemed to overwhelm me, I have never regretted doing therapy 
activities, eating programs, dressing programs, or other programs the team established. I have never regretted doing 
strange things in public places or staying home when the rest of the family went to play, in order to accomplish the goals 
we set for Laurie. It has not always been uphill. I have not always been as diligent as I should have been. Yet, the 

4 









anxiety lingers even though Laurie has been doing well for over six years. I am well aware that at any given moment I 
may receive that phone call - bringing me bad news - such as a reoccurrence of behavior problems, or some negative 
incident, etc. 

In the meantime, we are truly enjoying Laurie because of the person she has become and above all, she enjoys 
herself. . .she is a product of "tuff ' love. 

Editor's note: If you want to learn more about Annie and Garland's early years with Laurie, check out 
"Power of the Heart", which can be ordered through the TSBVI Curriculum Department at (512) 206-9240 or 
the TSBVI website at <www.tsbvi.edu>. 

Letter to Laurie 

By Roxy Wade Sauer, Sister, Spicewood, Texas 

This article appeared in the first edition of P.S. News! ! !, September 1987 

Laurie, 

I'm not you - 

You're not me 

But, do you know that if it weren't for you 

I wouldn't be me? 

I've learned so much from you - my little sister 

I'll never be able to explain it to you, 

You'll never know - it hurts. 

But then again maybe you do. 
Sometimes you communicate better than most people I know. 

You understand me on your level, 
I understand you on mine. 

Do you remember the time 

You held my head in your lap as I wept? 

I do - so very well. 

I know you're frustrated, sister, 

You have so much to tell and such limited means to do so. 

I'm frustrated, too. 

Sometimes you make others angry. 

But has anyone ever thought, 

About how many times they've made you angry? 

You have the rights everybody else does. 

You express yourself differently and that's okay. 

You're okay. 

I'm glad you're my sister and that 
You are and will always be a part of me and my life. 

With all my love, 
Roxy (Laurie's Sister) 



! 



J 



Communicating with Bruno 

By Gretchen Hester 

Reprinted with permission from reSources, 

Volume 10, Number 5, Communication Issue, Summer 1999, 

Published by California Deaf-Blind Services 

My three-year-old son, Bruno loves to be active. I try to involve him in many activities with his cousins - swim- 
tf ming, carving pumpkins at Halloween, visiting the Discovery Museum, and the petting zoo. Swimming is a favorite 
[j^ activity for Bruno because he enjoys more freedom of movement in the water. He enjoys touching objects, toys, and 

pets. He loves his English bull dogs ! We use books that have scents, shiny objects, and different textures to "read" to 

him. He will attend to a light box to play with his toys. He loves to be rocked back and forth, and to swing in his swing. 

For his birthday, I had pony rides and he enjoyed being on a pony although he was very medicated because of a big 

seizure the previous day. 

When Bruno was born, the doctors told me that he would not live and I should just take him home from the 
hospital and let him die. He just celebrated his third birthday ! Bruno has multiple disabilities which include severe 
epilepsy, developmental delays, cerebral palsy, a temperature regulation problem, and is cortically deaf and blind 
because of global brain malformations. He has agenesis (absence) of the corpus callosum (band of white matter that 
connects both hemispheres of the brain). He also has optic nerve hypoplasia in both eyes (it is much more severe in the 
right eye as compared to the left) and suffers from nystagmus as well. Bruno's medical needs have always been 
extensive so he has nursing care. He has been on many drugs to control his seizures, but they haven't worked. Last 
year, he started the ketogenic diet and that worked for a few months. Last October, he had a vagal nerve implant and 
that had helped him healthwise - but he still has seizures. Recently, he was in a study with Dr. Bill Good at the 
University of California, San Francisco. Dr. Good found that Bruno's myoclonic seizures affected his vision for several 
minutes after the seizure. 

I've learned how to interpret Bruno's communication by watching him carefully. When I was working at the 
University of California, San Francisco, I noticed that when we went outside, he would stop breathing, throw his arms 
back, and turn blue. I didn't know if this was a seizure. This happened several times and then after a hospitalization 
(attempting to determine the cause of the episodes) I figured out that wind was frightening him so much that he would 
stop breathing. There was a sort of a "wind tunnel" as we went out of the hospital building. Bruno is still afraid of the 
wind but is able to continue to breath. When we last went ice-skating, he was terribly scared when the wind hit his face 
while he was in his wheelchair on the ice. He much preferred attempting to skate with me holding him. This way, we 
were going at a slower speed and there was no wind, as well as he was more involved and could tell what was going 
on with sensory input of the ice skates on the ice. He is scared when he is not sure what is going on since he can't see 
or hear things that approach him, even wind. 

Often people who don't know him have a difficult time understanding him. They are not sure why he does not 
look at or listen to them. It is difficult for them to comprehend the idea of him as a deaf-blind child. Sometimes people 
will touch him on his face. He doesn't like this, and I believe it is because of all the tubes he had as a baby in the 
hospital. California Deaf-Blind Services and Jeri Hart from the Blind Babies Foundation have helped me learn how to 
communicate with Bruno. I use specific touch cues in particular situations. When he is in the hospital, I tap his toes 
before an injection or blood test. This warns him that something unpleasant is about to happen. At the swimming pool, 
I touch his lips to signal that he is going underwater. Before eating, I tap his hand that is holding the spoon. 

When he was a baby, I started with scents during everyday activities to help him understand what was coming up. 
I put rosemary in his bath to signal bath time, lavender on his pillow so that he would know it was time to sleep, and he 
felt and smelled bananas and pears at meals when he was going to eat them. Once he got the idea that certain scents 



were tied to these particular activities, I paired them with objects (a rubber ducky was used with the rosemary scent 
before going into the bath). I used other object cues like a leash to mean that we are going to walk his dogs. Because 
of his cerebral palsy it is difficult for Bruno to make signs but I have added a few signs to his object cues. I speak to 
him at the same time that I make a sign on his hand or help him make a sign. I'm learning signs and how to adapt them T1 
for him. By his behavior, I know that he understands the signs for STAND, SIT, WALK, EAT, DRINK, and MORE. ^ 



I use "identification cues" to help Bruno identify familiar people. He touches their ring, watch, or they touch him 
in a special way. For example, his grandmother kisses him on both cheeks to greet him. His aunt sings to him by 
placing her lips on his face. Because he can't see or hear me, he likes being physically close; so if he is alone, he yells 
to get my attention. Bruno has a little piano that he likes to play; he'll push on the same button over and over again to 
get me to come over to him and reset it. 

I was told that he would never drink or hold a bottle by himself, but now he does. I was told that he would never 
eat by himself. He doesn't as yet, but he holds his spoon and he loves eating, so eventually he will. 

Editor's note: I was fortunate to see Gretchen speak about Bruno through a wonderful distance education 
program from the California Deaf-Blind Project. She presented with Dr. Deborah Chen as part of a workshop 
on developing communication in children with deafblindness. I want to thank California Deaf-Blind Services 
and Dr. Chen for allowing us to reprint Gretchen 's article and an additional article, "Learning to Communi- 
cate: Strategies for Developing Communication with Infants Whose Multiple Disabilities Include Visual Im- 
pairment and Hearing Loss" which appears on pages 17-24 of this edition of SEE/HEAR. 



Family Finds Answers at CHARGE Conference 

By Bobbi Easier, mother of Katy Easier, 
a deafblind student at Pershing Park Elementary Killeen, Texas 

The 4th International CHARGE Syndrome Conference held in Houston, July 23 - 25, 1999, proved to be an eye- 
opening event. Questions that my husband and I began asking more than a decade ago about our daughter Katy 's 
deformities were answered at that seminar. CHARGE is an acronym, with each letter representing the six malforma- 
tions noted nearly 20 years ago by researchers who were studying the commonalties of specific abnormalities in their 
patients. 

Those common problems being: 

• Coloboma (holes) of the eye (in the lens, retina or both) 

• Heart defects 

• Atresia of the choanae (basically a lack of nasal passages) 

• Retardation of growth and/or development 

• Genitourinary abnormalities (small sex organs in both males and females) 

• Ear anomalies and/or deafness. 

The person does not have to have all six or, as was thought prior to 1 98 1 , four of the six common problems for a 
diagnosis of CHARGE to be made. Rather, a combination of major and minor criteria can indicate the patient has 
CHARGE. This important point was emphasized during more than one session at the conference, because many 
health care agencies are still going by the old standards and the syndrome goes undiagnosed. Without a proper 
diagnosis, certain facts, such as a need to test for growth and sex hormones levels, can go unnoticed and untreated until 
the youngsters are heading into their teens. A revision of the diagnostic criteria for the syndrome now takes into 
account that there are several features that are extremely common in CHARGE but very rare in other conditions. 

7 



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The four major features that cause a red flag are: Coloboma, Choanae Atresia, Ear Anomalies ("characteristic 
CHARGE ears") and Cranial Nerve Dysfunction (a factor not listed in the initial study of CHARGE). The cranial nerve 
dysfunction includes: a lack of smell; facial palsy; sensorineural hearing loss or vestibular problems; and swallowing 
dysfunction. In Katy 's case she does not have choanae atresia, but has the other three hallmarks of the syndrome. She 
was also born with several other problems that appear on the "minor diagnostic criteria" list for CHARGE, features 
that may occur, but are not consistent enough to be considered major criteria. 

Katy was born in March of 1 988 . Within the first 1 8 months of her birth, I suspected she might have CHARGE 
or something closely related to it, after reading about the syndrome in a book tided, "Handicapping Conditions in 
Children" by Bill Gillham. However, the genetics department of our area hospital, apparently still using the pre- 198 1 
guidelines in 1 988, "poo-pooed" my suggestion, pointing out Katy did not have all, nor even four, of the six abnormali- 
ties. Instead, they decided she had Treacher Collins Syndrome. After finding a support group for Treacher Collins, I 
began corresponding and exchanging photographs with other families. It quickly became apparent, to me and my pen 
pals, that Katy had been misdiagnosed. 

During that same time frame, we decided to get a second opinion on the treatment plan our area hospital had 
drawn up to correct Katy 's facial deformities. We had heard a lot of good things about the plastic surgery done at the 
Children's Hospital in Houston, so we went there for a second opinion. While we were there I quizzed the doctors 
about Treacher Collins Syndrome. The doctors there confirmed what I and the other "lay people/parents" had sus- 
pected - Katy did not have Treacher Collins Syndrome. Unfortunately, we had not scheduled an appointment to see 
a geneticist during that trip, and the doctors we were consulting with were not able to suggest what syndrome she might 
have. We went home knowing we had been sent down the wrong path by our area hospital. 

With no new leads, we were back to square one. We had planned to seek out another geneticist closer to home 
for more tests, when Katy faced yet another round of hospital stays for pneumonia and other problems. Getting Katy 
healthy and keeping her that way was the main focus of our concern. After weathering that crisis, we were in no rush 
to visit new doctors and have more expensive tests run, knowing that we might walk away with no new information. 
Without a syndrome to pin Katy 's deformities to, we had nothing to guide us on what the future might hold. I resigned 
myself to being in limbo about my daughter's future. That is, until a little over a year ago when I spoke with Robbie 
Blaha, who is with Texas Deaf-Blind Outreach in Austin. Robbie had attended a conference that featured information 
on CHARGE syndrome. After hearing about the various characteristics of these children she was convinced Katy 
needed a follow-up exam to determine if she had CHARGE. 

Wanting to learn more, but doubtful that our area hospital would be of any help, I began researching the Internet 
for information and tried to remain patient until the next CHARGE conference which, happily, was planned for Hous- 
ton. On July 24, one of the guest speakers, Dr. John Graham, M.D., Sc.D., the director of Clinical Genetics and 
Professor of Pediatrics at the UCLA School of Medicine, met with us and diagnosed Katy as having CHARGE 
Syndrome. 

With his diagnosis and a two-inch binder full of information in hand, I am confident I can have Treacher Collins 
Syndrome removed from Katy 's health records and replaced with the proper information. There is still no answer to 
the nagging question: Why was she born this way? But studies are being done. In fact, Katy and I had blood drawn 
at the conference for a CHARGE study being done by the Baylor College of Medicine in Houston. They also provided 
us with a kit to take home so my husband, John, who did not attend the conference, can also supply his blood for the 
study. 

Having been in the dark about Katy 's condition means we had to face a lot of uncertainty alone - no support 
groups or case studies describing what we might expect. During the conference I learned that many of the problems 
we faced with Katy, like the seemingly endless rounds of sickness, are common for children with CHARGE during 

8 



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their first two to three years of life. Also prevalent is an inability to walk until age 3, and the need for g-buttons and 
trachs because of throat problems that cause trouble with eating and breathing. I learned that children, like Katy, who 
survive the first three rocky years, tend to "turn the corner." Their health and many other aspects of their lives improve 
dramatically. This point is helping to ease our concerns about what might lie ahead health- wise, thus allowing us to *fl 
focus on her educational needs and growth as a person. The list of "If we had only known" is quite lengthy, but rather ^ 
than mourn the past we can now look towards the future with a better idea of what to expect and how to be better ^ 
prepared to help Katy to flourish into a healthy, productive person. My thanks go out to Katy 's fantastic case manager, ^ 
Molly O'Leary and the Texas Commission for the Blind for sponsoring our trip. Thanks also to Robbie Blaha and 
Texas Deaf-Blind Outreach for alerting us about the conference, supplying us with all the forms and registration fee to 
attend. 

If you have any questions about the CHARGE conference or about Katy I will do my best to answer your queries. 
My e-mail address is bobbike@wm.com (please indicate CHARGE or something similar in the subject line so I don't 
delete your note as unknown/spam mail). Our address is 301 Myra Lou Ave., Copperas Cove, TX 76522-2028. 

Editor's note: You may also wish to contact the CHARGE Syndrome Foundation, Inc., 2004 Parkade 
Boulevard, Columbia, MO 65202-3121. Phone: (800) 442-7604 or (573) 499-4694. Contact Marion Norbury 
(Executive Director) at marion@chargesyndrome.org, or Meg Hefner (Genetic Counselor) at 
meg@chargesyndrome.org. The 2001 Conference will be in Indianapolis, Indiana on July 20 - July 22, 2001. 
For more information please contact Marilyn Ogan (2001 - Conference Chair): marilyn@chargesyndrome.org. 



Dear God, Please Take Away My Energy - It's Too Hard to Handle 

By Edgenie Lindquist, Jonathan's Mom, Austin, Texas 

Editor s note: Children with visual impairments or deafblindness are not immune from having other 
disabilities to deal with in their lives. Recently I have had a number of families of children with visual impair- 
ment or deafblindness contact me about Attention Deficit Hyperactivity Disorder (ADHD) or Attention Deficit 
Disorder (ADD). The next two articles helped me understand some of the issues children with this type of 
disorder face and also what their families face. 

These words from one of my son's nighttime visits with God early this year will stay with me forever. They 
continue to fill me with mixed emotions - mixed in the sense that I'm grateful that at the age of seven Jonathan is very 
much aware that his energy sometimes needs "handling", but also saddened that this particular day had been very hard 
for him. Being a typical mom, days that overwhelm Jonathan are usually the pits for me, too. After all, moms are 
supposed to be able to kiss bad days away, aren't we? 

This particular night I hugged Jonathan and we talked about how he was feeling. We were able to explore what 
his energy meant to him. We came to the place where we agreed that he indeed has a lot of energy but that energy is 
also a good thing. We talked about how energy can be channeled to help him with his innate gifts of creativity and 
compassion. Hard work would be required - more than most people - but he had it in him to do it. After all, I told him, 
he comes from a family of hard workers. 

Jonathan and I have had other such conversations, but this one felt different - perhaps because he was at a 
different developmental stage where we could talk about his feelings more in depth, but more than likely it was because 
I now fully believe what we were talking about - with all my heart and mind. I saw my child differently that night. I saw 
a child with gifts that with some focus and hard work will lead him to a successful life. My shattered dream child had 
finally been put back together into a "real dream" - complete, whole and positive. 




I couldn't have had this conversation with my son as little as three years ago. As the old commercial says, I've 
come a long way.... When I first learned that Jonathan had ADHD, he was about to turn four and I was recently 
divorced. Needless to say, our lives were a tad bit tumultuous. The diagnosis was not easy because Jonathan was so 
young and because there were so many factors intermingled (the effects of a divorce, Jonathan having an auditory 
processing problem, etc.). I was determined to prevent a misdiagnosis. However, Jonathan's ADHD was severe 
enough that ultimately it became clear that although there were other issues, he needed immediate help. Because a 
support system for families dealing with ADHD wasn't readily available, I tapped into the system I knew best - the field 
(rehabilitation and visual impairments) I had been working in for over ten years. When I talked with people about our 
experiences with the multiple assessments, therapies, and entering into special education for speech services, most of 
the people were quick to make statements like: "You are so fortunate that you have your professional background to 
guide you through this process." 



Although their statement had some truth to it, my professional background was really a double-edged sword at 
the onset of my journey as a parent of a child with ADHD. Yes, I had some knowledge of how to make the system 
work, but this time it was my child - it was often tremendously difficult to put head knowledge to work about the person 
I cared most about in this world. I found that while professionals openly accepted me as a member of my son's team, 
they often would forget to explain basic information that I was unable to remember because of my new role as a parent 
participant. I was overly hard on myself for making mistakes and feeling the full impact of the grief. After all, I went in 
knowing what it was all about! 

As a mother, I spent my share of time wishing my son could be spared the challenges he faces. I spent so much 
time looking at the early challenges that I was in danger of overlooking his splendid gifts and talents. Jonathan and I had 
to break out of that mold. This was a wonderful kid with oodles of potential - 1 knew it and it was time to get him 
around other people that knew it. We both needed the boost. We both needed a circle of positive support. It took 
hearing from another parent in my profession to ease up on myself. She wisely said that just because I was "in the 
business" didn't mean that I didn't get the privilege of going through everything that parents go through when they learn 
their child has a disability. That was my first "ah-ha experience" of making a connection between what I knew in my 
head (my background) and what I needed to feel in my heart (I am first and foremost Jonathan's mom!). 

When Jonathan's ADHD was diagnosed it was hard not to fall into step with the world's faulty message that 
people who have disabilities are somehow "broken". Trust me, the world is full of role models out there if you want to 
concentrate on the negative. F ve always been an advocate of strength-based services but was finding it very hard to 
infuse this principle into services for my son. It seemed that at every turn a professional would give me information that 
highlighted another deficit, another negative. I found it very hard to operate with all this information and to deal with 
society's negative (and often incorrect) view of children who have ADHD. I wanted to concentrate on Jonathan's 
strengths! 

When Jonathan and I were leaving a speech therapy session one day, the therapist, whom I had grown to trust 
immensely, told me that we needed to have Jonathan evaluated by an OT because she saw several problems related to 
motor planning and sensory integration. The now familiar "kick in the stomach" feeling hit me so hard that I had to lean 
against a wall for support. Although I knew she was right (I was observing the same things), it was a major blow 
because I viewed his athletic ability as one of his strengths. Slowly but surely I began to realize that Jonathan can have 
a strength and a challenge in the same area. I began to learn how much strength-based services helped me not give in 
to the urge to give up but instead to accept the emotions I was feeling as healthy and to move on. I began to realize that 
how I reacted to what was happening with my child had a big influence on how others perceived him. It was then that 
I began to talk openly about Jonathan having ADHD as well as the other "dance partners" associated with the condition. 



I found that talking frankly about the challenges, and acknowledging what those challenges present to the people 
around him, put people in a better frame of mind. Yes, my child does have considerable "high energy". If the 

10 



environment is full of stimuli, he can become a living ping pong ball. Bringing this out and talking about it helped 
everyone realize that they were supported and that we were not making excuses for Jonathan's behavior. With that 
foundation in place, seeing his strengths seemed to come almost naturally. It was easier to build a support system for 
Jonathan that would help him develop skills needed to channel his challenges into strengths. *fl 



Building a support system of family, friends, doctors, teachers, childcare providers, therapist, and church commu- 
nity that has a positive attitude toward Jonathan has been an imperfect process. In our search we still keep coming 
across people who operate by focusing on what is wrong or broken or unsuccessful. Every time we get into this 
situation, it has disastrous results. 

Sometimes I've been quick to see a potential disaster, like the time I told a doctor to never tell any mother - 
including me - that she was "in denial" simply because she was asking what options her child has. We didn't go back. 

Sometimes I've been too slow in responding and Jonathan has paid dearly for it - like the time that I learned that 
a childcare facility was locking him in what they called the "bad boy" room when he was having difficulty with his 
emotions. I found out about the room one day when Jonathan said that he was a bad boy and no one should ever love 
him. He was just three years old! We left the facility that day. 

Our greatest successes have been with those wonderful people who are gifted in focusing on the positive. Most 
of these people unknowingly served as my mentors during our years of breaking out of the mold. For example, the 
speech therapist from Jonathan's school for the past two years shared with us such jewels as "Our kids just need more 
time on this earth to get it all right." This helped everyone keep the perspective that Jonathan may be developmentally 
behind in an area but he will catch up with the right support and in his own time. To help Jonathan begin the process of 
learning that taking medication is only one of the tools he needs to have self-control, she said, 'The control is also within 
you, not just in the pill." 

We've been blessed with the world's best teachers, therapists, family, and friends. Each one has done a beautiful 
job of helping Jonathan shape a positive self-image and learn strategies for dealing with his ADHD. They have all held 
up high expectations for him and cheered him on as he met them with glee. (Don't doubt for a minute that he didn't 
work hard for his successes - he has given it his all to achieve goals.) They've held mirrors up to both of us so that we 
could see his gifts: his artistic talent, wonderful sense of humor, and compassionate heart. I wish I could find the words 
to express how much their statements of his strengths helped me move beyond focusing on what wasn't right and to 
transition into a frame of mind where I'm confident that he will be all right. 

James Ochoa summarizes it perfecdy in his article when he says, "Although parenting ADHD children is a compli- 
cated process, the rewards are numerous." Jonathan and I have many years ahead of us as we grow through this 
process. Through it all, I'm sure that he will continue teaching me how to live life to its fullest. We will cherish our 
strong circle of support as helps keep us focused on our goals, reminds us to take care of ourselves, and celebrates the 
beauty of life's many special moments when Jonathan shines. 

Editor's note: I asked Edgeniefor a list of books that other parents might like to know about. Here are 
her favorite and most recommended titles: 

BOOKS FOR PARENTS 

Driven to Distraction by Edward M. Hallowell, M.D. and John J. Retey, M.D.; Simon and Schuster. 

Answers to Distraction by Edward M. Hallowell, M.D. and John J.Retey, M.D.; Bantam Books. 

11 



> 



r < 



Attention Deficit Disorder: a different perception by Thorn Hartmann; Underwood Books (the "hunter in a 
farmer's world" book). 

Taking Charge of ADHD by Russell A. Barkey, Ph D.; Guilford Press. 

Survival Strategies for Parenting Your ADD Child: dealing with obsessions, compulsions, depression, 
explosive behavior, and rage by George T. Lynn, M.A., C.M.H.C.; Underwood Books, Inc. 

GREAT CHILDREN'S BOOKS 

Shelley the Hyperactive Turtle by Debra Moss; Woodbine House Press (ages 3-7). 

Sometimes I Drive My Mom Crazy but I Know She's Crazy About Me by Lawrence R. Shapiro, Ph. D.; 
\n CTAPS (ages 6-12). 



Editor's note: Parents and professionals may also want to contact CHADD (Children and Adults with 

Attention Deficit/Hyperactivity Disorder), 8181 Professional Place, Suite 201, handover, MD 20785; Phone 
(800) 233-4050, or (301) 306-7070; Fax (301) 306-7090. CHADD held it's Eleventh Annual Conference on 
q Attention Deficit/Hyperactivity Disorder in Washington, D.C., October 7-9, 1999. To find out about future 
conferences and other information, contact them or visit their website at <www.chadd.org>. 



Parenting the Child with ADHD: Lessons in Humility & Courage 

By James Ochoa, M.Ed., LPC, LCDC, Austin, Texas 

Editor's note: Sometimes we assume that, if a child is visually impaired, this is his greatest challenge. 
Unfortunately, that may not be the case, especially if the child also has ADHD. Parents may think that the 
problems their child is having is related to his vision loss when in fact it may be related, at least in part, to the 
ADHD. I would like to thank James Ochoa for writing this article for SEE/HEAR. Hopefully it will help 
parents develop a better understanding about the importance of addressing the ADHD in their child with visual 
impairments. Mr. Ochoa is a psychotherapist in Austin, Texas. He has developed programs for ADHD chil- 
dren, adolescents and adults since 1979. He is married to his wife, Edie, whom he regards as his best friend. He 
has two sons, ages 4 and 8, and a beautiful Shetland sheep dog who constantly provide opportunities for his 
personal growth. James can be reached at (512) 918-ADHD (2343), or e-mail him at adhd@tcms.com. 

Parenting children with ADHD is one of the greatest challenges in a lifetime. Doing a good job of it could produce 
some of the most creative adults in the world. 

ADHD (Attention Deficit Hyperactivity Disorder) is a condition in which children, adolescents and adults have 
difficulty maintaining attention, concentration, and following through on tasks. They can be hyperactive and impulsive. 
Research indicates that conservatively 3-5% of the population is affected by this genetic condition. The severity level 
of ADHD varies with each individual. Generally the condition is diagnosed when the effects of the symptoms signifi- 
cantly impair the major life areas of school, social interactions, work and home. An individual can be diagnosed as: 

• ADHD/Predominately Hyperactive, where hyperactivity and impulsivity are the major problem areas, 

• ADHD/Inattentive Type, where difficulty maintaining attention and concentration is the primary problem, or 

• ADHD/Combined Type, where an individual has significant problems in all areas. 

12 





8 



ADHD has only recently been recognized as a condition that continues into adulthood. Research now indicates 
that 50% of children and adolescents will continue to have clinically significant impairment that is diagnosable as adult 
ADHD. The parenting process then becomes complicated by the fact that many parents have the very condition they 
are parenting in their children. It is essential these parents learn skills for parenting ADHD children or they will find 
themselves unable to intervene effectively due to their own issues with ADHD. 

Parents first need new information about ADHD research and skills for parenting to approach this monumental 
task. Then, by understanding the strengths of the ADHD child and incorporating them into the parenting process, 
parents will be able to face the challenge with an open mind and a positive outlook for success. 

INTERACTING WITH THE ADHD CHILD 

First, parents must develop a new mind-set about ADHD. Then, they must help their ADHD children develop a 
healthy mind-set as well. So how do you tell a child that he has ADHD? If you tell him that he has a "deficit" or a 
"disorder" it may leave him with the impression that he is broken. He probably already senses that he's different 
because of the comments and feedback he has received from peers, teachers, the media, and other uninformed adults. 
The last thing a parent wants to do is to make his child feel dysfunctional. Q 

2 

Children rely on their parents to provide them with accurate information about themselves and the way s of the VI 
world. They are very perceptive and may be sensitive to the fact that there is a problem. So if parents decide not to 
say anything to their child about his ADHD, they are making a big mistake. Parents may buy into the fallacy that if they 
just pretend that nothing is wrong with their child he will never know there is a problem. However, he gets a different Z 
message from those around him. This creates confusion and sets him up for more dysfunctional feelings. By not saying 
anything, well-meaning parents add to the problem they were trying to avoid in the first place. q 

z 

How much do you tell a child about ADHD? Six-year-olds perceive information very differently than ten-year- 
olds. It is important to consider the child's developmental stage. There are many books available to educate children 
about ADHD. By using these storybooks parents can put knowledge about attentional problems into language that 
their child can understand. 

Timing is also very important. Parents may want to take advantage of situations when their child is at ease (during 
play, car trips, or participating in an interesting activity) to discuss attentional problems. Using concrete examples from 
the child's own experiences may help him better understand his differences. 

The relationship between the parents and child plays a vital role in the development process of a child who has 
ADHD. It often determines whether or not the child will understand and trust what his parents tell him. Parents must 
address the child's ADHD. They can't assume that he doesn't notice his differences or, worse yet, they must not try to 
act like the ADHD is not really abig deal. Itis! ADHD is a huge deal to the child. It will have lifelong implications for 
the parents, the child, and their relationship. 

Parents will be challenged at every level in their relationship with their ADHD child. These challenges often force 
(or create an opportunity for) the parents to take a closer look at themselves. The relationship is often a difficult one, 
and parents tend to become overwhelmed with their parental role. They feel like failures. Parents may look into every 
new fad, try every possible intervention and support group, and still feel as if their child is an unbelievable challenge. It's 
at times like these when the relationship becomes most strained. 

It is important that parents monitor the relationship between themselves and their ADHD child. Parents must learn 
to recognize the point at which they step out of the parental role and become overly emotional. Beware ! An overly 
emotional adult pitted against an overly emotional child usually results in a power struggle that spins out of control. 

13 



Parents find themselves doing and/or saying things that they never would have thought possible. As parents develop a 
greater understanding about parenting an ADHD child, they become better able to recognize the patterns of conflict in 
their relationship. This is the first step in unwinding the cycle of conflict. 

Once parents recognize their own overly emotional behavior, they must learn exactly what triggers their distress. 
ADHD children are very perceptive and are quick to pick up on their parents' weaknesses. Parents must reach deep 
within themselves to remain calm and rational. Parents may need to examine their own childhood. If parents have 
unresolved childhood relationships with their own parents, it may be particularly difficult for them to handle similar 
situations with their child. They may experience greater emotional stress and overreact when their child goes through 
a developmental stage that caused them distress as a child. They may be emotionally blinded to see the situation for 
what it is. 

y. When parents become overly emotional they lose the perspective that allows them to be effective as parents. 

Z Sadly, if this powerful struggle goes unrecognized, it often leads to an abusive situation for both the parents and the 

child. This is why it is so important for the parent to become aware of his or her own emotional history as a child. Once 

fa parents recognize what triggers their distress, they can develop coping skills that will help them maintain control. For 

2 example, they may elect to take a break to cool down. A more composed parent can start anew in a more functional 

Q frame of mind. They also model an effective way for the child to monitor his own behavior by taking a break just as his 

U parents do. 

u! 

5 UNDERSTANDING ADHD 

5 

g Parents can benefit from creating a more functional frame of reference for ADHD. Many professionals approach 

Q this with a neurodevelopmental perspective. They believe that each child has a unique neurological development. 
fl While there are clear developmental norms where all children are similar, genetics, personality, and environmental 
^ aspects vary extensively. For this reason each child has a unique rate of neurological development. A child's rate of 
development may be accelerated in some areas and delayed in others. 

Dr. Mel Levine, of the University of North Carolina, takes the neurodevelopmental perspective even further. He 
formed the All Kinds of Minds Institute, which trains professionals to understand a child's behavior from a 
neurodevelopmental point of view. The adults learn about the neurodevelopmental process by interacting with children 
and helping them. Both adults and children learn that all children develop independently, at their own unique rate. 
Adults are taught to intervene effectively by highlighting a child's strengths and helping him accommodate for his 
weaknesses. According to Dr. Levine, there are no disorders, just differences in development. He teaches children to 
recognize their developmental strengths and weaknesses and to understand their individual differences. 

Attention is a neurological process. Research has shown that the attention centers in the brain are located in the 
frontal lobe. This area of the brain has been found to be less active in individuals with ADHD than in individuals who 
do not have ADHD. Research in this area has focused primarily on the neurochemical processes in the frontal lobe, 
particularly on the neurotransmitters like Serotonin, Norepinephrine and Dopamine. We have learned that Serotonin is 
responsible for regulating the mood. Norepinephrine is responsible for evaluating the relationship of cause and effect 
which contributes to impulsive acts. Dopamine is the brain's focusing agent. It helps bring information from deep 
within the brain to the surface and helps the brain hold on to external stimuli. 

All of these neurotransmitters contribute to an individual's ADHD, but Dopamine appears to contribute the most. 
Medications are used to control or lessen ADHD symptoms. It is imperative to share this information with children in 
a way that they can understand. 

The School Home Improvement Programming Strategies (SHIPS) Project, founded by Byron Kocen, M.D., 

14 



takes a more functional approach to ADHD. Research has shown that when there is a difficulty maintaining attention, 
a true neurological problem exists. SHIPS has taken this link one step further, maintaining that individuals with ADHD 
are highly creative and often very passionate about something in their lives. They are often talented and their level of 
interest in their creative areas surpasses that of their peers. They also have a different way of looking at life and a 
different way of doing things. Because children with ADHD go about life a little differently, their ideas and behaviors 
are frequently misunderstood. Thus, SHIPS created a different way to describe them, as individuals with "Attention 
Creative Difference". 

Attentional differences do become a "deficit" and a "disorder" for ADHD children when they are asked to 
complete tasks which seem boring, routine or monotonous. This is especially true when tasks require excessive 
attention to detail with little room for flexibility. The SHIPS Project works to reframe the "deficit" and "disorder" by 
building on the child's individual creative strengths and talents. It teaches parents to work with their ADHD child to 
develop systems and routines to help monitor the details in all areas of their lives. This results in a much more successful 
parenting relationship and a happier, emotionally healthy child. 



V> 



PARENTAL INTERVENTION § 



The behavior of an ADHD child is one area that requires considerable energy and involvement on the part of the j§j 

parent. Children with ADHD respond to the world, and to their parents, differently. They are often able to see through jjj 

the situation and manipulate the outcome because they are very smart, creative, and quick to perceive parental weak- "^ 

nesses. Disciplining the ADHD child requires quick thinking, creative parents. Parents are encouraged to learn as 

much as they can about ADHD so they can monitor their child's behavior and creatively intervene when there are differences. Z 

PROBLEM SOLVING TECHNIQUES 3 

All children need to feel as if they have some control over their lives. This is especially true of children with ADHD ^j 
because they often feel as if they have no control over their internal environment. Involving an ADHD child in the 
discipline process gives him a sense of control. Involving the child in the problem solving process makes him feel as if 
he has a stake in the outcome. It often encourages him to access his creativity to find solutions to the problem. 

When problems arise, as they so often do with attentional children, parents must intervene to redirect inappropri- 
ate behaviors. The best strategy is to help the child monitor his own behavior to prevent a problem before it occurs. If 
that fails, the parents must creatively work with the child to solve the problem. This requires the parent to remain calm 
in a time of frustration. It's important to remember that the attentional child looks at the world from a different point of 
view and may not see his behavior as a problem. 

IDENTIFY THE PROBLEM 

Frequently the parent's first task is to help the child identify the problem with his behavior. Let him retell the event 
in his own words. Be careful not to subject him to your feelings or opinions; this can make him feel powerless. Ask him 
to state the problem in his own words. Listen to him intently, being careful not to interrupt, and encourage him to find 
a way to communicate clearly. After the child finishes explaining the problem, you can help by clarifying misperceptions. 

BRAINSTORM POSSIBLE SOLUTIONS 

After identifying the problem, the next step is to begin finding a solution. Bramstorming possible solutions with 
your child is the ideal place to begin. In this step it is important to identify as many solutions as possible, even some that 
may appear quite outlandish. Later in the process you will evaluate them, but for now just throw out ideas. Write them 
down. Try not to discourage his participation by being critical of his ideas either verbally or through body language. 



15 




EVALUATE THE SOLUTIONS 

After brainstorming, ask your child to help evaluate all of the solutions. Assist the child to see the whole picture 
and how each solution will affect it. Be careful not to make light of any solution offered by your child and be as flexible 
as possible. You do not want to discourage his participation in the future. Work together to eliminate suggested 
solutions that won't work. Your child may feel discouraged if you cross off more of his ideas than yours. So, when you 
are generating possible solutions, you may want to put some silly solutions into the mix so some of your solutions can 
be crossed through as well. 

Since your child will be held accountable for whatever solution is decided upon, it will help if he feels as if he has 
some say in the process. Even if your child arrives at a solution that is different from yours, if it will work without 
damaging property or endangering anyone, give it serious consideration. After coming to agreement on the solution, 
write it down. Praise your child for helping you solve the problem and ask him to commit to the solution. 

BEHAVIOR MANAGEMENT SYSTEMS 

The use of positive reinforcement with ADHD children can be the most effective part of any program. Children 
with ADHD receive so much negative feedback that positive feedback is always needed - the more the better. One 
treatment center required that a positive statement be given every 1 5 seconds in a group of eight to ten ADHD children. 
An ADHD psychologist used to say that if you don't go to bed tired of giving your child positive statements, then you 
have not given him enough. It is more likely you are tired from criticizing and redirecting behaviors. Positive reinforce- 
ment should be the essential part of every system for an ADHD child. 

Children with ADHD often respond well to a reward system, especially when they are involved in the process. 
These systems can be very simple or very complex. Generally speaking, the severity of behaviors you want to 
extinguish will determine the degree of complexity needed in the reward system. 

The most important rule is to involve the child. Focus on and explain the behaviors you want to see. Do not put 
emphasis on the behaviors you do not want to see. Use a positive tone of voice when you identify behaviors that you 
would like to see. It is best not to address more than three behaviors at a time. 



There are three key factors in successful parental intervention to keep in mind when designing a behavior manage- 
ment system: 

1 . First and foremost, keep it simple. If your child appears to be frustrated or becomes oppositional, it may 
mean that your behavior management system is too complicated. 

2. Tell your child exactly what is expected of him, using words or pictures to provide an example of the outcome 
you would like to see. 

3. If you are attempting to create a certain behavior, let him help decide what the behavior should be. For 
example, if you are targeting the behavior of keeping his room clean, it might help to give him some control 
over where the trophies, toys, and so forth should be kept. 

Behavior management systems usually work well with ADHD children if the reward motivates him. Find out such 
things as what he would like to spend his money on or whom he would like to spend time with. This will give you clues 
about possible rewards. 

When your child achieves the targeted behavior it is tallied. Younger children under 7 years old usually respond 
better to getting a chip or sticker. Children older than 7 years tend to respond better to a point system. When they 
have acquired a specific number of chips or points, they will receive the reward. The reward system will probably need 
to be used for six or seven weeks, until the desired behavior has been established. Taper the system down slowly after 



16 



it is no longer needed. Keep in mind, however, that you may need to pull it out again two or three times a year, 
depending on the needs of the family. 

Although parenting ADHD children is a complicated process, the rewards are numerous. The joy of seeing an 
ADHD child develop to his full capacity and grow into a successful adult is every parent's wish. 

The vigor with which many individuals with ADHD live their life is phenomenal. They grasp life by the horns and 
ride it, never letting a moment pass that they can fully experience. The shutting down effect that the media, uneducated 
adults and peers has on individuals with ADHD is heartbreaking. I urge you to join in the effort to create a new 
understanding of these individuals so they can live happy, full, creative, and successful lives. 



Learning to Communicate: Strategies for Developing Communication with 

Infants Whose Multiple Disabilities Include 

Visual Impairment and Hearing Loss 

By Deborah Chen, Ph.D. Professor, California State University, Northridge 

Reprinted with permission from reSources, 

Volume 10, Number 5, Communication Issue, Summer 1999, 

Published by California Deaf-Blind Services 

All infants communicate through crying, fussing, smiling, body movements, and other nonverbal behaviors. With 
repeated interactions, their parents, families, and other significant caregivers interpret the meaning of these signals and 
respond accordingly. Through these early exchanges, infants discover that their behaviors have a powerful effect on 
their caregivers and develop more efficient ways to communicate - through gestures and words. However, when m 
infants have a visual impairment and hearing loss in additional to other disabilities, the communication process does not pQ 
develop naturally. Their early communicative behaviors may be subtle or unusual and therefore difficult to identify and Q 
interpret. For example, an infant (who is totally blind and hard of hearing) may become quiet when her mother speaks A 
to her. This passivity may be misinterpreted as disinterest rather than attentiveness. Another infant (who has cerebral 
palsy and is deaf) may grimace his body when his father picks him up. These behaviors may be misinterpreted as 
rejection rather than excitement. 



At the same time, our usual responses, i.e., by talking to hearing infants or by signing to deaf infants, may not be 
understood or even perceived by infants with sensory impairments and multiple disabilities. Communication with these 
infants requires careful planning, consistent attention, and specific procedures. The purpose of this article is to discuss 



Z 



selected strategies that families and service providers can use for communicating with infants (birth to 36 months) who £l 
are not yet using words and who have significant and multiple disabilities. 

GETTING STARTED 

Because the meaning of an infant's early communication behaviors is tied to context, we must first identify how and 
why an infant communicates during familiar activities. These observations provide information on an infant's current 
level of communication and ways to support interactions. 

Make careful observations to interpret infant behaviors 

1 . Observe the infant in an everyday caregiving activity (e.g., diaper change, dressing, feeding, or bathtime) and 
a familiar social activity (e.g., being tickled, action songs, being rocked, or other early games). 

2. Identify how the infant shows interest, dislike, fatigue, or boredom though his or her behavior. 

17 



3. Identify whether the infant communicates for (a) behavior regulation (e.g., to get someone to stop or start 
doing something by protesting, refusing, or rejecting; requesting objects; or requesting actions); or for (b) 
social interaction (e.g., to get someone's attention by greeting, seeking attention; requesting -social routines; or 
requesting comfort). 

Next, we should find out about the family's typical activities and communication practices. This way, strategies 
will be tailored to fit the family's lifestyle and will be more useful to the family. 

Family information 

1 . What is a typical day like for your infant? 

2. What are your infant's favorite objects, activities, and people? 

3. What are your infant's most disliked objects, activities, and people? 

4. How does your infant communicate with you? What is he or she usually trying to tell you? 

5. When is your infant the most communicative? 

6. Have you found any special ways that help you to communicate with your infant? 

7. What activities do you enjoy doing with your infant? 

8. What songs or baby games do you play in your family? 

9. What words do you use frequently in everyday activities with your baby? 

10. What do you say when your baby does something that you like or makes you feel proud? 

1 1 . When is a good time or what is a good activity for playing with your baby? 

Taking time to discuss these questions is important for all families and absolutely essential when service providers 
and families have different cultural and linguistic backgrounds. Otherwise, a service provider's suggestions for sup- 
porting the infant's communication may conflict with family practices. For example, an infant may be confused if an 
English-speaking service provider says "good boy" to praise him while his Spanish-speaking mother says 'bravo." 
Explanations of sign hand shapes based on English letters, e.g., "S hands" for the sign SHOE, will not make sense to 
non- English speaking families who do not know the manual alphabet and is not immediately useful if the infant does not 
wear shoes. Only through careful observations of the infant and thoughtful discussions with families, can service 
providers suggest communication strategies that are most appropriate for a particular infant and respectful of the 
family's culture. 

SELECTED STRATEGIES 

We must differentiate between the methods for communicating with an infant (input) and the ways in which an 
infant is most likely to communicate (output). Input and output communication methods must be tailored to meet the 
individual learning needs of each infant. For example, a mother may ask an infant "want to swing?" by using an object 
cue (a blanket) for input, while this infant indicates "yes' by wiggling her body (output). 

COMMUNICATION INPUT MUST BE ACCESSIBLE TO THE INFANT 

Make use of the infant's available senses 

Infants with multiple disabilities must receive comprehensive audiological and ophthalmological evaluations since 
they are more likely to have vision and hearing problems than infants without disabilities. An infant's visual impairment 

18 



is usually identified before a hearing problem because it is more obvious. If an infant is identified as having a visual 
impairment and hearing loss, then every effort must be made to determine whether the infant would benefit from 
corrective lenses and hearing aids. 

Communication tips 

• Speak naturally and close to an infant's ear. This is a natural way to help the infant discriminate speech from 

the environmental sounds, particularly if the infant has a slight hearing loss, middle ear infection, or other 
hearing problem, and does not wear a hearing aid. 

• Reduce unnecessary noise. Turn off the television or radio and reduce other background sounds if you want 

the infant to pay attention to what is being said or other spoken information. The signal (speech) must be at 
least 30-40 dB louder than the background for a hearing infant to be able to attend to it; so background 
sounds will interfere with the ability to understand what is said. 

• Hold the infant on your chest and dance or sway in time to vocalizations to help the infant make a connection 

between sound and movement. 

• Imitate the infant's own vocalizations or actions. Infants will imitate behaviors that are within their own 

repertoire before they imitate new behaviors. These imitation exchanges can become enjoyable turntaking 
games. 

• Develop other infant games, for example, by playing "peek-a-boo" and removing the scarf from the infant's 

face after saying 'peek-a-boo" or bouncing the baby in time to vocalizations. 

Match the infant's developmental level. Our communication should fit the infant's cognitive ability and be tied to 
ongoing actions and objects that the infant can perceive. Many infants whose multiple disabilities include visual impair- 
ment and hearing loss benefit from the use of caregiverese, anticipatory cues and key word signs. 



CAREGIVERESE 








How we interact with infants is very different from the ways in which we interact with children who have language. 
Hearing parents speak to infants using higher pitch and exaggerated intonation. Deaf parents sign to infants by making 
the movements bigger, making the signs on the infant's body, or making the sign on the object to which it refers. In 
these interactions, both hearing parents and Deaf parents use animated facial expressions, gestures, short simple 
phrases about what the infant is seeing or doing, and repeat words, touch the infant, wait for the infant's response, 
interpret the infant's behaviors as communication, and imitate and expand on the infant's utterances. These character- 
istics of so-called "motherese" or "fatherese" help infants to participate in early conversations. 

Z 

Communication tips £) 

• Use short phrases with repetitive words to allow the infant time to process and understand what is said/ 

signed, for example, "take a drink", "you're thirsty", "drink some juice", 'thirsty baby.' 

• Add words to the infant's action to assist the infant's understanding of words and their meanings, for example, 

"up, up, up" when picking the infant up. 

• Use facial animated expression to engage the infant's visual attention, if appropriate, and to support what is 
said, and to communicate in a natural way. 

• Use natural gestures visually or tactually to engage the infant's attention, to communicate the meaning of 

words, and to model the use of gestures in communication, e.g., wave bye-bye when saying "bye-bye", 
gesture when saying "down." 

19 



ANTICIPATORY CUES 

Anticipatory cues are specific sensory prompts to help prepare the infant for an upcoming activity. They include: 
tactile cues (e.g. , "let's put your sock on" may be communicated by touching the infant's foot which is a touch cue) or 
by having the infant touch the sock (object cue); auditory cues (e.g., tapping the spoon against the bowl to indicate 
"let's eat"); kinesthetic cues (e.g., rocking the infant in your arms before placing her in the hammock); olfactory cues 
(e.g., having the baby take a whiff of the soap before bathing him); or visual cues (e.g., wiggling your fingers in the 
infant's visual field before picking him up). Do not use cues that elicit a negative reaction or are difficult for the infant to 
perceive. For example, for infants who have had many pricks on their feet from blood tests, touching the foot would 
be an aversive tactile cue for "let's put your socks on." Other infants may be very sensitive to certain scents and react 
negatively to olfactory cues. Cues should be selected carefully for each infant, made in a consistent and precise 
manner, and have a clear connection with what they represent. This way the infant can develop an understanding of 
their meaning. For example, an infant will be confused if different tactile cues are used for the same message (e.g., 
touching the lips, or the chin, or the cheek to indicate "let's eat") or if different tactile cues on the face have different 
messages (e.g., touching the lips means "let's eat", touching the chin means "open up for your toothbrush."). 

FREQUENTLY ASKED QUESTIONS ABOUT CUES 

Is there a certain sequence for using cues with infants? 

There is no research on the use of cues with infants to guide how they should be introduced. Cues should be 
individualized for each infant and dependent on the specific activity. However, a helpful principle is to begin with a cue 
that will be easily understood by the infant, that is clearly related to the activity, and that is presented immediately before 
the activity begins. For example, initially, it is probably easier for an infant to understand "get ready for your bath" 
through a tactile cue (putting his hand in the water just before being put in the tub) than being given a whiff of bathsoap 
(olfactory cue). Begin with just a few cues that are very different from each other, and that represent different activities, 
and are therefore easy for the infant to discriminate and to discover what they mean. For example, use a tactile cue for 

Q bathtime (putting the infant's hand in the water), a touch cue for diaper change (tug on the infant's diaper), and an object 

2 cue for playtime (quilt for the blanket swing). 

What is the difference between a sign and a cue? 

A manual sign is a symbol, a word, or a unit of language that represents something. For example, the sign MAMA 
represents mother no matter the situation. A cue is a prompt that is individualized for each child, is dependent on the 
specific activity or context, and is used to encourage a specific behavior. For example, tapping a child on the chin may 

Q be a prompt for "open up" if the caregiver wants to brush the child's teeth; or for "take a bite" during meals; or "close 

Q your mouth" to prevent drooling. 

k KEY WORD SIGNS 

Many infants with multiple disabilities benefit from key word signs which are selected signs adapted for the 
infant's learning needs. Using key word signs is not the same as using the simultaneous method (spoken English 
together with a sign system based on English) or using American Sign Language (ASL) which has its own grammar and 
visual-spatial rules and is a different language than English. Initially, a key word sign is really a prompt or cue to engage 
the infant's attention and to build an understanding of the meaning of a word and what it represents. For example, the 
sign EAT made either by the adult touching the infant's lips with a flat handshape or by assisting the infant to touch his 
own lips is really a touch cue or gesture rather than a sign. When key word signs are used with infants who have low 
vision, the infant's visual needs must be considered. Signs should be made so the infant can see them, that is, within the 
infant's visual field and at an optimal viewing distance; the rate of sign production and size of hand movements should 
be modified to enable the infant to see the sign; and the signer's hands should be clearly visible in contrast to his or her 
clothing. 

20 



SELECTING KEY WORD SIGNS FOR COMMUNICATION INPUT 

1 . Ask the family to make a list of words that are most important for communicating with their baby. 

2. Develop a list of vocabulary with family members and service providers, decide on the signs to be used for 
these words, identify any adaptations that are needed, and use selected signs consistently across activities. 

SELECTED ADAPTATIONS FOR KEY WORD SIGNS 

• Make signs on the infant's body. 

• Physically guide the infant to produce signs (coactive signing). 

• Make signs smaller and close to the infant's face. 

• Orient the infant's attention to a signer by touching the infant's face or body. 

• Use tactile modeling by placing the baby's hands on yours to feel the sign movements (interactive signing). 

• Match the number of movements of the sign with the number of syllables in the word when providing commu- 

nication input, e.g., MAMA is two movements. 

Build on the infant's interests and strengths. Infants are likely to attend to objects, activities, and people they like 
and are more likely to request these favorite things. For example, an infant who loves movement will be motivated to 
ask for "more" of a bouncing game. This favorite activity may be used in an interrupted routine strategy to elicit 
communication output, as shown below. Selected methods for encouraging the infant's expressive communication 
should be based on the infant's abilities. For example, infants who Can control their hand movements are more likely to 
use some signs expressively than infants who have motor problems. An infant is more likely to make a choice between 
a favorite object and a disliked object than between two objects of equal appeal. 

INTERRUPTED ROUTINE STRATEGY J0 



1 . Select a movement activity that the infant enjoys and do about three movements. 

2. Create a need for the infant to communicate by stopping the movement. 

3. Wait quietly (count silently to 10 or 15 depending on the infant's response time) and observe what the infant 
does. 








4. If the infant responds, interpret the infant's behavior as communicative. Add words to the infant's behaviors. 
Respond to the infant's communication by continuing the activity. 

z 

5. If the infant does not demonstrate an observable response, prompt the desired response (e.g., wiggle the ** 
infant's arms or legs), and immediately continue the activity. 

Repeat this prompting procedure two more times so that the infant has three direct instruction experiences. Then 
repeat from Step 3: interrupt the activity and wait quietly for the infant's response. 

CRITERIA FOR SELECTING FIRST SIGNS FOR PROMOTING COMMUNICATION OUTPUT 

1 . Identify the infant's favorite activities, objects, and people based on observations and the family interview 
described previously. 

2. To represent these preferences, select signs that are easy to produce, touch the body (e.g., EAT, MAMA), 
have symmetrical movements (e.g., MORE), and look like or feel like what they represent (e.g., EAT, 
WASH, DOWN). 

21 



! 



3. Provide frequent opportunities for the infant to use these signs. 

CONSIDERATIONS FOR SELECTING KEY WORD SIGNS 

AS COMMUNICATION OUTPUT FOR INFANTS WITH MOTOR PROBLEMS 

• Identify key words that have been selected by the infant's family and service providers and determine their 

usefulness for the infant's expressive communication. 

• Determine whether a manual sign is the most effective way for this infant to express a desire or need. What 

type of physical assistance does the infant need to produce the selected sign? Is there an easier way for the 
infant to communicate (e.g., using an object, picture, or other signal system)? 

Provide time and repetition. Very young children without disabilities need to hear a word used in context about 
200 times before they use it. Infants with multiple disabilities will need even more repeated experiences to understand 
the meaning of a cue or word used in everyday activities. This significant need for consistency and repetition highlights 
the importance of making communication an essential part of every learning activity and daily routine. Not only the 
infants, but everyone involved with them - family members and service providers - should all be learning how to 
communicate. 

ANNOTATED BIBLIOGRAPHY 

Selected resources for supporting early communication with infants 
who have severe and multiple disabilities 

Bricker, D., Pretti-Frontzak, & McComas, N. (1998). An activity-based approach to early intervention (2nd 
ed.). Available from Paul H. Brookes Publishing, Baltimore, MD, <www.brookespublishing.com>, (800) 638-3775. 
Provides a process and format for infusing early intervention objectives within an infant's daily routine. 



X Casey-Harvey, D.G. (1995). Early communication games. Routine-based play for the first two years. 

£* Available from Communication/Therapy Skill Builders, San Antonio, TX, <www.hbtpc.com>, (800) 211 -8378. Play 
activities which support early communication development of infants. 

Chen, D. (Ed.) (in press). Essential elements in early intervention: Visual impairments and multiple dis- 
abilities. Available from AFB Press, New York, <www.afb.org>, (800) 232-3044. Chapters on a variety of topics 
including early intervention purposes and principles, meeting the intervention needs of infants with multiple disabilities, 
caregiver-infant interaction, early communication, functional vision assessment and interventions, understanding hear- 
ing loss and interventions, clinical vision assessments, audiological evaluations, creating meaningful interventions within 
daily routines, and adaptations for including preschoolers with multiple disabilities in typical settings. 

Chen, D. (1997). What can baby hear? Auditory tests and interventions for infants with multiple disabili- 
ties [closed captioned video & booklet]. Available from Paul H. Brookes Publishing, Baltimore, MD, 
<www.brookespublishing.com>, (800) 638-3775. Video examples of audiological tests, functional hearing screen- 
ings, interviews with parents and early interventionists, and classroom activities with infants. 

Chen, D. (1998). What can baby see? Vision tests and interventions for infants with multiple disabilities 
[closed captioned video & booklet]. Available from AFB Press, New York, <www.afb.org>, (800) 232-3044. 
Video examples of clinical vision tests, interviews with parents and an early interventionist, and related activities with infants. 

Chen, D., Friedman, C.T., & Calvello, G. (1990). Parents and visually impaired infants. Available from 
American Printing House for the Blind, Louisville, KY, <www.aph.org>, (800) 223- 1 839. Collection of protocols for 




22 



gathering information and developing intervention activities for infants with visual impairments based on observations 
and caregiver interviews, for using videotaped data collection, tips for conducting homevisits, and for developing 
home-based social routines. 

Chen, D., Klein, D.M., & Haney, M. (in review). Project PLAI. Promoting learning through active interac- 
tion [closed captioned video]. For information contact deborah.chen@csun.edu or call (8 1 8) 677-4604. Video 
examples of a five step process for developing communication with infants with multiple disabilities including visual 
impairment and hearing loss. 

Chen, D, & Schachter, P.H. (1997). Making the most of early communication. Strategies for supporting 
communication with infants, toddlers, and preschoolers whose multiple disabilities include vision and hearing 
loss [closed captioned video & booklet]. Available from AFB Press, New York, <http://www.afb.org>, (800) 232- 
3044. Video examples of early caregiver-infant games, simulations of visual impairment and hearing loss, strategies to 
promote communication with infants and preschoolers, interviews with parents and teachers, and activities in an oral 
communication preschool class, and in total communication classrooms for toddlers and preschoolers. 

Freeman, P. (1985). The deaf -blind baby: A programme of care. Available from William Heinemann Medical 
Books, 23 Bedford Square, London, WCTB 3NN, England. A comprehensive guide of strategies to support the early 
development of infants who are deaf-blind. 

Gleason, D. (1997). Early interactions with children who are deaf-blind. Available from DB-LINK, The 
National Information Clearinghouse on Children who are Deaf- Blind, <www.tr.wou.edu/dblink>, (800) 438-9376. 
Booklet on early communication strategies. 

Harrell, L. (1984). Touch the baby. Blind and visually impaired children as patients - helping them respond 
to care. Available from AFB Press, New York, <www.afb.org>, (800) 232-3044. Booklet that discusses touch cues 
and signals to help prepare an infant for uncomfortable procedures in a doctor's office or hospital. 

Klein, M.D., Chen, D., & Haney, M. (in review). Project PLAI. Promoting learning through active interac- 
tion. A curriculum facilitating caregiver interactions with infants who have multiple disabilities. For informa- 
tion contact deborah.chen@csun.edu or call (818) 677-4604. A curriculum composed of 5 modules for developing 
early communication with infants with multiple disabilities including visual impairment and hearing loss. 



*0 






! 



Lueck, A.H., Chen, D., & Kekelis, L. (1997). Developmental guidelines for infants with visual impairment. 
A manual for early intervention. Available from American Printing House for the Blind, Louisville, KY, <http:// 
www.aph.org>, (800) 223- 1 839. A review of related developmental research with implications for early intervention JJ 
and suggestions for activities in the following areas of development: social-emotional, communication, cognitive, fine Q 
motor, gross motor, and functional vision. 

Lynch, E. W., & Hanson, M.J. ( 1 998). Developing cross-cultural competence (2nd ed.). Available from Paul 
H. Brookes Publishing, Baltimore, MD, <www.brookespublishing.com>, (800) 638-3775. A comprehensive and 
invaluable source. Provides a review of the literature related to cultural diversity, child-rearing practices, cultural 
perspectives on disability, and healing practices. Identifies the process of developing cultural-competence with par- 
ticular implications for early interventionists. Specific chapters discuss working with families of Anglo-European, 
Native- American, African- American, Latino, Asian, Pilipino, Native Hawaiian, and Middle Eastern backgrounds. 

Morgan, E.C. (Ed.). (1994). Resources for family centered intervention for infants, toddlers and preschoolers 
who are visually impaired. VIISA Project (2nd.). Available from Hope, Inc. Logan, UT, <www.hopepubl.com>, 

23 



(435) 752-9533. A comprehensive two volume guide for addressing the intervention needs of young children with 
visual impairments. Topics include: working with families, support services, early intervention programs, transition, 
preschool programs, and curriculum units (communication, language, social-emotional development, child-care and 
self-care, orientation and mobility, learning through the senses, and cognitive development). 

Rowland, C. (1996). Communication matrix. A communication skill assessment for individuals at the 
earliest stages of communication development. Available from Oregon Health Sciences University, Center on Self- 
Determination, 3608 SE Powell Blvd, Portland, OR 97202. An instrument which identifies the range of communica- 
tion development from pre-intentional behavior and intentional behavior to the use of abstract symbols and language. 

Watkins, S. (1989). A model of home intervention for infant, toddler, and preschool aged multihandicapped 
sensory impaired children. The INSITE model. Available from Hope, Inc. Logan, UT, <www.hopepubl.com>, 
(435) 752- 9533. A comprehensive two volume resource which provides practical information for the role of parent 
advisors (early interventionists) in working with families and strategies for enhancing early communication, hearing, 
vision, cognition, motor, and social-emotional development. 



Ultraviolet A, Blue Light and Children 

By Elaine Kitchel, Low Vision Research Associate, 
American Printing House for the Blind 

For years now, professionals in the fields of light energy and vision have known about the hazards of ultraviolet 
(UV) light. Even experts differ as to the exact wavelength of UV light waves. Generally speaking, however, UV light 
is defined as the part of the spectrum which is divided into UV-A (380-3 15 nm), UV-B (3 14-280 nm), and UV-C 
(279-200 nm). 

UV-C and UV-B, though harmful will not be discussed here since they are virtually absent from indoor light. 
However, a recent boom in the number of practitioners using blacklight activities has brought about high levels of 
exposure to UV-A and blue light for a significant number of children. Why is that a problem? Recent research in 
cellular biology has shown that exposure to the UV-A and blue light waves emitted by blacklight tubes can have long 
term negative effects for persons exposed to it, especially children. 

Blue light, that part of the visible spectrum which ranges for 500 to 38 1 nm, makes up half of the light emitted from 
black light range. However, until recently, little had been offered in the way of information about how blue light, and 
UV-A affect the eye structures of children. 

Bear in mind that as the lens of the eye ages, it begins to yellow. This yellowing gives adults some, but not 
adequate, protection against UV-A and blue light. However, children have not lived long enough to have this yellow- 
ing. Therefore UV or blue light which enters the eye will strike the retina at full-strength exposing not only the retina, but 
the lens to damage. Dr. W.T. Ham, who has conducted research on the effects of UV and blue light has written, 

Most authorities do not believe that the near UV radiation absorbed throughout life by the lens is 
a contributing factor to aging and senile cataract. Thus by protecting the retina from near UV radia- 
tion, the lens may become cataractous. My own personal opinion is that both the retina and the lens 
should be protected throughout life from both blue light and near UV radiation. (Ham, 1983, p. 101) 

If Dr. Ham is concerned about exposure to UV and blue light from the exposures of daily living, one has to wonder 
what he would say about young children who are being exposed several times a week to UV and blue light from 

24 



blacklight activities. Many of these children receive no protection for their eyes, and for those that do, most of it is 
woefully inadequate. 

What is it about UV-A and blue light which make them hazardous? Tests done by Drs. Ham and Chen show that 
when UV-A and blue light strike the retina the light waves inhibit the formation of a chemical called cytochrome 
oxidase. This chemical is an important part of retinal cells because it transports oxygen to photoreceptor and other 
retinal cells. Without cytochrome oxidase, the cells become deprived of oxygen and eventually die. When enough cells 
die, retinal degeneration occurs. 

Many people have said that UV-A and blue light will not harm children if the length of time of exposure is limited, 
or if frequency of exposure is limited. In Sweden, Dr. E. Chen exposed the retinas of mice to moderate levels of blue 
light. Two days later, lesions showed up on the rodent's retinas after only 2 minutes of exposure. Similar research was 
conducted by Drs. Gorels and van Noren. They concluded that the retinal damage done was a feature of the wave- 
length, not duration or frequency of exposure. This means, that even a short exposure to blue light, without adequate 
protection, can cause retinal damage. 

The experiments of Drs. Chen, Gorels, and van Noren were later done on primates with similar results. The eyes 
of rhesus monkeys are very similar to our own. Drs. Sperling, Johnson and Hawerth exposed the retinas of rhesus 
monkeys to blue light and found, 

...extensive damage in the retinal pigmented epithelium form absorption of energy by the mela- 
nin granules. It should be pointed out that the damage seen, including the macrophagic activity, 
disrupted cells and plaque formation, is characteristic of that seen by Ham et al. (1978), and others in 
what he calls the photochemical lesion. 

Often the lesions from UV-A and blue light are scattered on the retina. It is only when enough of them appear and 

coalesce that one begins to notice a vision loss. This is why vision loss is not immediate, but often takes many years to *0 

manifest. This is the reason why children, especially ones who already are suffering from a vision loss, must be 7* 

adequately protected. Q 



Protection against blue light damage is simple. However, most practitioners who use blacklight tubes do not use 
adequate protection. Most who bother to use any protection at all, use clear polycarbonate lenses for the child and 
none for themselves. It cannot be emphasized strongly enough both practitioner and child who are exposed to the 
light emitted from blacklight tubes must be protected. Yellow polycarbonate lenses offer complete protection, in 
most cases, against blue light hazard. Various goggles and lenses are available from such vendors as NoIR Medical 
Technologies and Solar Shield. Objects will still appear to fluoresce if viewed through a yellow polycarbonate filter. 

With adequate protection being inexpensive and available, practitioners should be vigilant in their efforts to protect 
the eyes of themselves and of the children who are exposed to the damaging effects of UV-A and blue light. 

You may read more about blue light hazard by requesting a copy of "The Effects of Blue Light" from 
Elaine Kitchel at APH, 1839 Frankfort Avenue, Louisville, KY 40206-0085. 

BIBLIOGRAPHY 

Chen, E. (1993). Inhibition of cytochrome oxidase and blue-light damage in rat retina. Graefe's Archive for 
Clinical and Experimental Ophthalmology. 23 1 (7), 4 16-423. 

Fedorovich, LB., Zak, P.P., & Ostrovskii, M.A. (1994). Enhances transmission of UV light by human eye lens in 
early childhood and age-related yellowing of the lens. Doklady Biological Sciences. 336 (1). 204-206. 

25 







Z 





Gorgels, T.G., & van Norren, D. ( 1995). Ultraviolet and green light cause different types of damage in rat retina. 
Investigative Ophthalmology & Visual Science. 36 (5). 851-863. 

Ham, W.T., Jr. (1983). Ocular hazards of light sources: review of current knowledge. Journal of Occupational 
Medicine. 25 (2). 101-103. 

Ham, W.T., Jr., Ruffolo, J.J., Jr., Mueller, H.A., & Guerry, D., HI (1980). The nature of retinal radiation damage: 
dependence on wavelength, power level and exposure time; the quantitative dimensions of intense light damage as 
obtained from animal studies, Section n. A pplied Research. 20 . 1005-1 1 1 1 . 

Pautler, E.L., Morita, M., & Beezley, D. (1989). Reversible and irreversible blue light damage to the isolated, 
mammalian pigment epithelium. Proceedings of the International Symposium on Retinal Degeneration (pp. 555-567). 
New York: Liss. 

Rozanowska, M., Wessels, J., Boulton, M., Burke, J.M., Rodgers, M.A., Truscott, T.G., & Sarna, T. (1998). 
Blue light-induced singlet oxygen generation by retinal lipofuscin in non-polar media. Free Radical Biology and Medi- 
cine^ 1107-1112. 

Sperling, H.G., Johnson, C, & Harwerth, R.S. (1980). Differential spectral photic damage to primate cones. 
Vision Research. 20 . 1117-1125. 



Visually Impaired Go to Camp - 
Students Learn About the Sea and a Lot About Independence 

U By Mel Huff, The Brownsville Herald, Brownsville, Texas 

£ Reprinted with permission by the Brownsville Herald 

A young girl with shoulder-length brown hair held a starfish upside down in her cupped hand and touched the 
mouth at its center. "Look at that!" Brittany Madsen exclaimed as the thing curled a leg. 

Madsen, a white cane tucked under her arm, crowded around a table with other students who were examining 
seaweed, urchins and other creatures in one of several large plastic trays. At the head of the table, Scarlet Colley held 
a large hermit crab close to a group of students. 

"This is a red hermit crab," she said. "He's got green, green eyes !" 

"Awesome!" another girl breathed. 

The students were taking a hands-on tour of marine life with environmental educators George and Scarlet Colley 
on South Padre Island. The students could have been any children at camp, but these children are visually impaired. 

For seven years now the Region I Education Service Center has held camps for blind students. For the last three 
years, children from Region II in Corpus Christi and Region HI in Victoria have joined them. The camp was designed 
with parents as well as children in mind, said Peter Graves, who wrote the original grant proposal with Linda Chromaster. 
Both are Region One education specialists and certified vision instructors. Graves noted that it's hard for lots of 
parents to let a child with a disability go away and develop independence. "Our goal is to help parents learn to relax," 

26 



he said. At the same time, children with disabilities can have a hard time developing independent living skills. 

Graves said he expects that many campers will go to camps sponsored by the Texas School for the Blind and 
Visually Impaired in Austin in the future. Our camp is a "first camp experience" close to home. If they have never been 
away from home before, the transition is much more difficult. 'This helps prepare them and their families," Graves said. 

This is the second year Jessica Blake, 8, has been to the camp. Her mother, Cheryl Blake, said going to camp 
again was all Jessica could talk about since January. "They learn they can do things by themselves. It really builds their 
confidence," she said. Blake, a nurse at Valley Baptist Medical Center, volunteered to help with her daughter's camp 
this year. "Homesick youngsters can call home at no charge at night, and parents can call or visit camp to see how their 
children are doing," Blake said. 

The children were at Jeremiah's Water Park on Wednesday. The park has a trail with railings on both sides, 
Graves noted, so "once kids get the feel of it, they're on their own, (although) we're always there watching." 

Since Monday, the 32 campers, ages 7-18 have gone fishing on the Island Princess, played at Jeremiah's, driven 
at Ben's Go-Karts and ordered dinners at Blackbeard's. 

"Most haven't had these kinds of experiences," Graves said. "We have children who have never been to the 
beach, who have never been to a buffet or ordered a meal in a restaurant." One camper last year had never seen a 
dishwasher. 

Camp refines the children's skills for daily living, said Christie Waida, a teacher from Region HI in Victoria. The 
campers make their breakfasts and lunches, pick up their clothes, and make their beds. "Some have never made their 
sandwich or put a toaster pop in the toaster," Waida said. Graves gives the campers money to buy their own dinners, 
and they have to figure out how much they can spend for a meal, adding in their drink and tip. They order from menus 
Graves types in Braille. Jfl 

In addition to providing campers the experience of responsibility, camp gives children the experience of freedom. 
Wednesday evening many campers who will never drive a car controlled the speed and steered go-karts, with a 
teacher telling them when to turn right or left. "At first I said, 'Oh, no! Am I going to drive?'" said Hilda Nino, a 16- 
year-old student from Rivera High School. "Then I said, 'This is really cool ! '" 



13 

s 





"I don't like to go out at night," remarked Yesenia Burgos, also 1 6 and a student at Lopez. (Burgos has limited 
night vision.) "We crashed a couple of times, but it was really fun!" she added. Burgos said the camp offers visually 
impaired students an opportunity to meet others who are like them. 2 

D 

"They don't treat us differently," Nino said. "At school, they are afraid of talking to you or even touching you. 
Here they aren't." This is Nino's second year at camp and Burgos' third. Some children have come back for four or 
five years. Many teachers and lifeguards also come back year after year. 

Waida talks about witnessing "the wonder of discovery" when she watches campers touch a fish for the first time 
or hold a fiddler crab and see how soft its claws are or experience what a wave is. 'This is the greatest refresher and 
learning experience I have all year," she said. "It reminds me why I decided to dedicate my life to teaching." 

Fabian Lara has been a lifeguard at the camp for three years. After the first year, he changed his major to 
education for the hearing and vision impaired. "Some of these kids had never been near the water," he said. "Just to 
see their expression change" when they get in is what draws him back every year. 

27 



TSBVI Short Courses: A New Service Delivery Model 

By Dr. Lauren Newton, Principal of Special Programs, TSBVI 

The Texas School for the Blind and Visually Impaired is developing new ways to serve students in Texas with 
visual impairments. TSBVI will be offering intensive short courses in special areas related to vision impairment (e.g., 
technology, independent living skills, O&M). The focus will be on courses that may be difficult to teach with enough 
intensity in some public school settings. The programs could vary in time from a long weekend to a week, two weeks, 
a month or a semester, depending on the subject(s) being taught. Similar intensive, short-term programs are being 
developed throughout the country for children who are generally successful in their local districts but could benefit from 
a special boost in certain disability-related areas of instruction. 

In Spring 2000, TSBVI will pilot two new programs. In addition, I will be talking with schools and parents across 
Texas to learn more about other programs they would like to see for their children. These programs are offered at no 
cost to local districts and parents (other than a small family fee for community outings when applicable). At the present 
time, this offer includes transportation costs. The spring programs will be small so that TSBVI staff can work out 
problems before expanding. They will be: 

• A one- week, intensive technology class during the month of March 

• A three-weekends camp for specific Independent Living Skills (January, February, March) 

In Summer 2000, TSBVI will offer additional short instructional courses. These courses will occur simultaneously 
with the enrichment programs the school has traditionally provided in the summer. Then beginning Fall 2000, short 
courses will gradually increase during the regular school year. 

Short-term programs will become better defined as they are implemented and evaluated by schools and parents. 
Students eligible for programs at this time are those who are on grade level, or no more than two years below 
grade level. These are the students who are most likely to benefit from brief instruction, then continue to progress in 
their regular classrooms. 

All programs will contain supplementary instruction in the areas of Independent Living and Social Skills. Transi- 
tion services for a student's transfer to TSBVI and then back to the local school will be an important part of every 
program. Our goal is that transition services will be jointly implemented by local district staff, parents and TSBVI. A 
short intervention is likely to have little lasting effect without this help for the student when he or she returns to the 
district. 

The content of future classes is being considered at this time but remains open to input from statewide consumers. 
Some possibilities are: 

• Adapted Mathematics (e.g., Nemeth code, abacus, tactile graphs and graphics) 

• Adapted Science (emphasis on labs and tactile representation of concepts) 

• Elementary School programming focused on literacy, math, O&M and technology 

• Adapted Technology 

• Orientation and Mobility 

• Literacy 

• Independent Living Skills 

• Social and Self-advocacy Skills 

28 



TSBVI will continue to publish updated information in SEE/HEAR and on the TSB VI website as the short 
courses are better developed. Please direct your questions and comments to: 

Dr. Lauren Newton 

Principal of Special Programs 

Texas School for the Blind and Visually Impaired 

Austin, TX 78756 

E-mail: newton l@tsbl.tsbvi.edu 



Life's Continuing Education Courses 

By Terrell I. Murphy, Executive Director, Texas Commission for the Blind 

Both of my kids are in college now and soon their mother and I will be in the empty nest stage of our lives. As we 
continue the process of nudging them out of the nest, I keep reminding my son and daughter that their education doesn't 
stop when they get out of school. This first year as executive director of the Commission has certainly been one 
uninterrupted continuing education course for me ! I learn something valuable every day. 

Two of the most interesting "electives" I recently signed up for were a week-long orientation and mobility class 
here in Austin and a three-day trip to The Seeing Eye in New Jersey as an invited guest. Learning some of the basic 
skills of traveling with a cane and dog guide were great opportunities to experience confidence building in action. 
During each session I was under blindfold and under the wings of a competent instructor's watchful eyes. I was 
nudged along with encouragement, and with every step I took my self-confidence grew. 

There's been some speculation about whether simulated experiences such as these are realistic enough to give a 
person a smattering of what it's like to be blind. That's a debate that will live on way past me. I know I could have 
taken my blindfold off, but I didn't. I actually learned to cross a busy street with a cane and got better at sensing the 
directional changes in the harness of a meticulously trained dog as he guided me around shin-threatening fence posts. 
The result? I not only learned more about the methods used to teach travel skills but also learned more about myself. 
I found that the head knowledge I'd gained after 27 years in the field of rehabilitation matched my personal experi- 
ences. If I were to lose my sight tomorrow or ten years from now, I know a lot of hard work would be ahead, but I'm 
confident that with some good instruction I can still learn. Blindness is life-altering and sometimes a detour, but it isn't 
the end of productivity. 

We've been talking a lot about confidence at the Commission this past year, and I mentioned our Texas Confi- 
dence Builders initiative in another issue of SEE/HEAR. Blindfold training is only one aspect of our initiative. Looking 
back, we have gained a lot of ground in making sure our services concentrate on building self-confidence rather than *J 
dependence on government and others. Although the Commission certainly isn't in the parenting business, we feel a m 
sense of pride when the individuals we work with gain the confidence to leave the nest of rehabilitation services 
because they have learned the skills to be confident travelers, workers, and participating community members either 
for the first time or once again. It's equally rewarding to watch children who have visual impairments grow more self- 
confident because of the specialized services available today. Along with their parents, we celebrate their day-to-day 
progress toward being all they can be. 1 

As this issue is being written, our new fiscal year planning initiatives are underway and another school year has just J3 
begun. I hope your learning experiences have been and continue to be as exciting as mine ! 



29 




New Guidelines Will Assist States 

By Phil Hatlen, Superintendent, Texas School for the Blind and Visually Impaired 

For the past two years, a group of writers has been working hard drafting a new publication called "Blind and 
Visually Impaired Students: Educational Service Guidelines". The National Association of State Directors of Special 
Education (NASDSE) is in charge of this project, which has been funded by the Hilton/Perkins Foundation. Dr. 
Gaylen Pugh was selected as Project Director, and has been very effective in keeping the writing of this document on 
track. I was privileged to be one of the writers. 

I want to emphasize the potential impact of this publication. NASDSE membership is comprised of the special 
education leaders in each state. They have a tremendous influence on policy and practice regarding educational 
services for students in their respective states. More specifically, members of NASDSE have the capability of deter- 
mining educational services for blind and visually impaired students. I also emphasize that we educators for blind and 
visually impaired students did not go to NASDSE to promote the writing of this publication. They came to us. I have 
to believe that the members of NASDSE recognize the need for new guidelines that will enable them to serve blind and 
visually impaired students more effectively. 

What follows is a NASDSE news release announcing the new publication. It provides some detail about the 
content of "Blind and Visually Impaired Students: Educational Service Guidelines" . If you do not receive a copy, 
please order one - you'll be glad you did. 

It's Ready, It's Out There! 

NASDE and Hilton/Perkins Publish the Blind Initiative Guidelines 

In September, NASDSE and the Hilton/Perkins Program of the Perkins School for the Blind disseminated their 
educational service guidelines for students who are blind or visually impaired. The intention of this guidelines document 
is to provide assistance to state and local education agencies, service providers, and parents. The document describes 
essential program elements and features which must be considered when designing appropriate services for students 
who are blind or visually impaired, including those students with multiple disabilities. A full continuum of options is 
included. 

The process for developing this guidelines document, as well as its format and design, was patterned after NASDSE's 
Deaf Initiative guidelines published in 1994. The Blind Initiative document is the collaborative effort of 13 national 
organizations that have special interest in the provision of services to visually impaired persons and their families. 
Representatives from the major national consumer, advocacy, and educational organizations comprised the writing 
team: A larger panel of content experts provided review and comment on draft chapters. 

The document is organized into five chapters, a glossary, and extensive appendices. Chapter One presents the 
theoretical constructs on which the other chapters are based. It discusses what educators need to know about the 
unique educational needs of students with visual impairments. It outlines public policy and legislation that affect these 
students and their rights to full participant in the general school curriculum. In Chapter One and subsequent chapters, 
the role of parents as equal partners in the educational process is discussed. 

Chapter Two presents the framework for services. It outlines the responsibilities of the state education agency to 
maintain a unit to ensure the policies, procedures, and personnel are in place to meet the unique educational require- 
ments of students with visual impairment. The role of the state agency in providing adequate and timely resources and 
appropriate reading materials, along with a full array of placement options, is discussed. 

30 



Chapter Three describes the process of identifying and assessing individual needs. It addresses the issues of 
personnel administering assessments, the need for on-going assessment of student progress, the interaction of func- 
tional vision and additional disabilities, and appropriate learning and literacy media. This chapter reinforces the need 
for parent involvement and the responsibility of the educational system to include parents in meaningful ways through- 
out the process and decision making. 

Chapter Four identifies concepts that must be addressed following assessment in reviewing program options and 
placement. Educators working collaboratively with parents and students develop programs in educational setting 
which meet the unique individual needs of each student who is blind or visually impaired. These options allow the 
students an expanded core curriculum and appropriate opportunities to participate with peers and mentors who are 
visually impaired, as well as with those who are sighted. 

Chapter Five describes characteristics of personnel who will work with students who are blind or visually im- 
paired, including those with multiple disabilities, in appropriate placements once they have been identified. This chapter 
discusses the specialized knowledge, skills, and attributes needed to provide educational and orientation and mobility 
services to students who are visually impaired. Proficiency of educational personnel in literacy and communication 
modes (including Braille reading and writing and use of optical devices) and specialized training of service providers in 
orientation and mobility, assistive devices and technology including Braille, speech, and low vision technology are also 
discussed. 

The Glossary provides an in-depth look at some of the terminology used throughout the document. A user- 
friendly table of contents assists the reader in locating specific information as some issues overlap and are repeated in 
different contexts. The Appendices section will provide the reader with valuable resources and more extensive expla- 
nation of chapter content. 

The document has been distributed to state directors of special education, organizations, and parent and con- 
sumer groups by the Hilton/Perkins Foundation. Individuals seeking additional copies should contact the Hilton/ 
Perkins Foundation, Perkins School for the Blind, Watertown, MA. For further information on the project, contact Dr. 
Gaylen Pugh, Project Director, National Association of State Directors of Special Education, (256) 772-4350 or via 
e-mail at hlpughjr@aol.com. 



Editor 's note: There are several new books out that parents and even professionals may want to purchase 
related to IEPs and IDEA. These books were review in the 1999 Library Summer Selection (a special supple- 
ment to Exceptional Parent magazine). We thought you might enjoy learning about these publications. 

The Prospector and Goal Mine 

Written by Don & Maureen Cahill 
Reviewed by Tricia and Calvin Luker 

Reprinted with the expressed consent and approval o/Exceptional Parent, a monthly magazine for parents 
and families of children with disabilities and special health care needs. Subscription cost is $36 per year for 12 
issues; Call 1-877-372-7368. Offices at 555 Kinderkamack Rd. Oradell, N.J. 07649. 

We parents of children with special needs must learn to navigate through many different service systems while 
raising our children. For most parents, the school system provides the greatest challenge and requires the most effort. 
Federal and state laws protect the educational rights of children with special needs. However, these laws are enforced 
through a procedural maze most parents find to be complex and unfriendly. 

31 



The Prospector and Goal Mine, by Don and Maureen Cahill, gently but effectively guides parents through the 
special education maze, empowering them to be strong advocates for their children's needs. Although the authors 
assume readers are generally familiar with an Individualized Educational Plan (TEP), they breathe life, and understanding 
into the core element - goals and objectives - of all IEPs. 

The Prospector and Goal Mine come in a single, spiral bound volume written in parent-friendly language. Sample 
goals and objectives are divided into practical subject areas to make it easy for readers to find suggestions specific to 
their particular need. 

The Prospector concisely describes educational "goals" and "objectives", and clarifies the distinctions between 
them. The authors walk the reader through how goals and objectives are developed and how they should be used to 
plan and measure a child's educational course. 

In Goal Mine, the authors apply The Prospector's lessons in 26 educational needs areas. Over 5,000 examples 
show what good goals and objectives look like and give readers specific goals and objectives to use on their child's 
IEP. Suppose a child diagnosed with Attention Deficit Disorder has difficulty attending school. Goal Mine offers 5 1 
specific goals/objectives which promote the targeted need of improved attendance. 

While the special education system can overwhelm many families, The Prospector and Goal Mine 's wealth of 
accessible information helps ease the confusion. They are a "must carry" item in every parent's or advocate's educa- 
tional arsenal. We highly recommend this volume. 



Free and Appropriate Public Education (5th Edition) 

By Rud and Ann Turnbull, Love Publishing 

Reprinted with the expressed consent and approval ^/Exceptional Parent, a monthly magazine for parents 
and families of children with disabilities and special health care needs. Subscription cost is $36 per year for 12 
issues; Call 1-877-372-7368. Offices at 555 Kinderkamack Rd. Oradell, N.J. 07649. 

Our first book review presented what we believe is a "must carry" resource in every advocate's briefcase - The 
Prospector and Goal Mine, by Don and Maureen Cahill. We are now pleased to present the second book that is a 
"must" for the effective advocate - Free and Appropriate Public Education (5th Edition), by Rud and Ann Turnbull. 
It is the defining legal resource for all special education advocates. 

The Turnbull's, who co-founded and co-directed the Beach Center on Families with Disability at the University of 
Kansas, take the cumbersome legal process that is special education and turn it into a powerful, reader-friendly guide 
to understanding special education advocacy. The book has three parts which include: an introduction to the Individu- 
als with Disabilities Education Act (IDEA); the six principles of the law; and the enforcement of the law. This edition is 
updated to include the 1997 IDEA amendments. 

The first part of the book places the special education struggle in historical context, preparing the reader for the 
principles at the heart of IDEA. The Turnbulls tell the reader where the law comes from, and why it is needed. This 
explains its power in the special education process. The reader learns how to make this law work for individual 
students. A reader who understands why IDEA was needed in the first place will be well armed to advocate for a free, 
appropriate public education for all students. This historical framework alone makes the book invaluable. 

The second part of Free and Appropriate Public Education focuses on the six principles of IDEA: zero reject 
(including discipline); nondiscriminatory evaluation; appropriate education (including positive behavior support); least 

32 












restrictive environment (access to general education); due process (including mediation); and parent participation. The 
Turnbulls leave no stone unturned in detailing what families of children with disabilities have a right to expect from 
school administrators and teachers. The first-time reader is thoroughly educated about the law and how it relates to 
children with disabilities. The return reader and practicing advocate is given sophisticated information directly appli- 
cable to specific issues. The Turnbulls put each principle into historical perspective as well as the script of practical 
day-to-day reality. 

The book's final section tells parents how to use the law to obtain a truly free appropriate education for children 
with special needs. They give the reader a straightforward discussion of how IDEA is enforced. The authors give 
equal emphasis to hardball legal mechanisms and emerging alternative dispute resolution practices. A parent or advo- 
cate who understands how the law really works is better able to weigh specific choices for their child. 

Free and Appropriate Public Education also includes comprehensive resources. This 400-page hard cover 
book contains the 1997 IDEA amendments; a glossary; a table of important cases; and extensive excerpts from the 
three landmark educational rights cases. 

This book is ideal for the parent who cannot take advantage of opportunities to attend or participate in special 
education training or conferences. In addition, it serves as an invaluable resource to those parents and advocates who 
provide training opportunities or direct advocacy for other parents and families. The book is easy to use to refresh 
one's understanding of specific concepts or procedures. Finally, Free and Appropriate Public Education constantly 
reminds readers that IDEA belongs to the families and not to the schools. It is not unreasonable for families to ask that 
IDEA be followed. The Turnbulls have given families a brief case resource which lets them put reason into practice. 
We heartily recommend this book and award it the Exceptional Parent Symbol of Excellence. 

Free and Appropriate Education, item code LV 129ED, can be ordered through the Exceptional Parent Library, 
telephone (800) 535-1910. 



Secrets 

By Nancy Adrian, Volunteer Coordinator 
North Texas Taping and Radio for the Blind, Dallas, Texas 

There are some well-kept secrets in Dallas, Texas - approximately 2,400 of them - and they are multiplying 
rapidly. 'THEY" are the 2,400 titles of recorded books waiting for listeners in the library of North Texas Taping and 
Radio for the Blind. Never waiting to gather dust, these books are educating, instructing and entertaining thousands of 
children and adults across the state - people with vision impairments, learning disabilities and those with the inability to 
pick up or hold their books and magazines. 

Of course, there are other sources for recorded books. The National Library Service, city and county libraries, 
American Foundation for the Blind, American Printing House, local commercial firms which rent and sell books on 
tape - all with their benefits, all with some drawbacks. So, how is NTTRB better (or worse) than these? 



At NTTRB, we read on request books sent to us by our clients. Once completed, and if deemed to have a wide 
appeal, the books go into our standing library for distribution to everyone. Herein also lies our one drawback - speed 
of completion. Because we utilize strictly volunteer readers, the time it takes us to produce can create an embarrass- 
ment for us and an aggravation for our clients. Most, however, have learned that our readers are wonderful, and with 
our other benefits, the wait is worth it. 



< 



33 



At NTTRB, we utilize standard two-track cassettes. This makes the bundle which arrives at your door a little 
larger, but this enables you to play these recordings in the car, on a "Walkman", or on any regular tape player. 

At NTTRB, we believe you probably like some books so much that you'd like to keep them around for a second 
or third listening. We also know that moving tapes back and forth sometimes gets to be inconvenient. Thus, the 
recordings become your property. We don't want them back. Besides, if you leave them in the car on a 100+ degree- 
day, or spill the morning coffee on them, we'd rather this be your problem. We will, rest assured, replace the damage 
at no cost. If, however, you receive a book and don't like it at all, do send it back. Somewhere out there someone is 
aching to hear it. 

At NTTRB, all we ask to get the process started is a phone call to our 800 number - no application or enrollment 
forms required. 

At NTTRB, the cost to you is NOTHING. As long as you live within the state, we send your recorded books 
through the mail as "FREE MATTER FOR THE BLIND", at no charge to you, our listeners. 

So you see, there are some differences ! Hopefully enough to make you curious enough to give us a try. With as 
much talent as exists within our agency, and with the amazing time and devotion our volunteers give to the production 
of the recordings, we want their voices to fulfill the mission which brings them in to read in the first place. Catalogs of 
our recorded books are available for a phone call. Sorry, no copies in Braille or on cassette - they change daily, and 
would require an inordinate amount of time to keep updated. 

Well, the secrets are out! Please, give us a call at (800) 87 1-7668 or (214) 87 1- 7668. Our fax number is (214) 
87 1 -7669. Direct your inquiries to Sharon Komom or Nancy Adrian and they will make certain you find many books 
worth listening to. 



Funding Assistive Technology 

From the UCP website 
<www.ucpa.org> 

United Cerebral Palsy (UCP) is pleased to offer you a series of booklets developed by Neighborhood Legal 
Services National Assistive Technology Project and UCP. These booklets contain the most up-to-date information on 
funding assistive technology through the health, education and Vocational Rehab systems. 

Funding of Assistive Technology - The Public School's Special Education System as a Funding Source 

The Individuals with Disabilities Education Act of 1997 (IDEA) offers many exciting opportunities to support 
students with disabilities, family members and school personnel through the use of assistive technology. UCP is 
pleased to provide with you a comprehensive document that gives you with the most current information on the state 
of the law and AT funding. This document should provide you with a working knowledge of the relevant laws, 
regulations and interpretations of them as they relate to a school district's obligations under the law. We hope you find 
this publication useful and find it useful in helping families and students with disabilities gain access to technology. 

Funding Augmentative and Alternative Communication Devices Through Medicare - 
The Decision Making and Appeals Process for Non-HMO Participants 

u\ As the number of adults with disabilities eligible for Medicare increases, the use of this untapped resource for 

z 






funding creates new funding options for individuals seeking augmentative communication devices. We hope you find 
this publication useful in your continuing efforts to fund technology for those who need it. 

Funding of Assistive Technology: 

State Vocational Rehabilitation Agencies and Their Obligation to Maximize Employment 

This publication covers important topics of critical importance to individuals with disabilities who are entering the 
workforce including students transitioning from school, assistive technology for the college student, and the availability 
of assistive technology. 

If you would like a paper copy of any of these booklets, contact United Cerebral Palsy, 1660 L Street, NW, Suite 
700, Washington, DC 20036-5602. Phone: (800) USA-5-UCP or (202) 776-0406; TTY: (202) 973-7197; Fax: 
(202) 776-0414; E-mail: ucpnatl@ucpa.org; or visit the website at <www.ucpa.org>. 



The SURE Project 

By Jean Robinson, Family Support Specialist, TSBVI, VI Outreach 

I recently received some information from Partners Resource Network outlining a new project that has just been 
funded and is called The SURE Project. The mission of the SURE (Seeking Unlimited Recreational Experiences) 
Project is to improve the quality of life for children and adults with disabilities through recreation and social activities. 
The project's goals include: 

1. Build Partners Ranch, a 26 acre camp/retreat center near Evadale, TX. The camp will be 100 % accessible 
to people with disabilities. 

2. Integration of people with disabilities into current programs through community education and awareness. 

3. Create recreation and social activities for children and adults with disabilities. 

4. Become financially stable through community support and fundraising. 

5. Have some fun and games. 

The SURE project will be sponsoring events and activities year round. One of the main areas of focus is outdoor 
activities, e.g., nature hikes, ball games, camp-outs, and picnics. The project will enlist the help of various service 
organizations as well as individuals who would like to volunteer their time. Events and activities take place primarily in 
Angelina, Chambers, Hardin, Jasper, Jefferson, Liberty, Montgomery, Nacogdoches, Newton, Orange, Polk, Sabine, 
San Augustine, San Jacinto, Tyler, and Walker Counties. 

Contact SURE Project at (409) 898-4684 for an up-to-date schedule of new activities. This project is funded by 
a federal grant through the US Department of Education. 

For more information contact: Partners Resource Network, Inc. - The SURE Project, 1090 Longfellow, Suite B, 
Beaumont, TX 77706-48 19; phone (409) 898^684 or (800) 866-4726; or visit their website at <http://www.paitnerstx.org>. 



<www.puzzlemaker.com> 

Teachers and parents, welcome to Puzzlemaker! On this website you can create puzzles and games 
for your newsletters, flyers, handouts, or classroom assignments. 

35 



Z 






Mail or e-mail your new classifieds to Jim Durkel at: 

TSBVI Outreach, 1 100 West 45th St., Austin, TX 78756, or durkelj @tsbl .tsbvi.edu. 

An up-to-date Statewide Staff Development Calendar is posted on TSBVI's website at <www.tsbvi.edu>. 



4 



14 

z 



Through Your Child's Eyes 

Have you ever wondered how your child "sees" the 
world? Have you ever considered what a world with 
little or no sight might be like? If these questions seem 
important to you, then Through Your Child's Eyes was 
designed with you in mind. At this workshop you will 
have the opportunity to: 

• meet other parents of children with visual impair- 
ments and deafblindness 

• learn how the eye works and how your child's 

visual impairment impacts his vision 

• participate in activities that simulate visual impair- 
ments 

• learn about the resources available to you and 
your child 

• learn about advocating for quality programming 

for your child 

• meet adults who have visual impairments 

Target audience: Parents of young or recently diag- 
nosed children with visual impairments, including mul- 
tiple impairments. This workshop has been scheduled 
in the following locations: 

Corpus Christi: January 8 - 9, 2000 

Contact: Joyce West at ESC 2 
(361) 561-8524 

Waco: February 25 - 27, 2000 

Contact: Tina Herzberg at ESC 12 
(254) 666-0707 
or 
MollieO'LearyatTCB 

(254) 753-1552 

Ft. Worth: April 28 - 30, 2000 

Contact: Judy Hamilton at TCB 
(817)926-4646 



International Parent to Parent 

Conference 2000: 

"Pioneering Spirit - 

Blazing New Trails" 

May 5 - 7, 2000 

Reno Hilton Casino and Resort 
in Reno, Nevada 

Nevada will be the host for the 10th biennial Interna- 
tional Parent-to-Parent Conference, one of the largest 
conferences of parents and families in the world. It will 
bring parents/families and professionals from around 
the world together to share and learn from each other 
about how best to support families and develop best 
practices for people with disabilities as we transition 
into the 2 1 st Century. 

Topic areas include: 

• Family - professional relationships & partnerships 

• Innovative programs and strategies 

• Community resources and collaboration 

• Leadership building for family members 

• Strategies for addressing challenges of diversity 

and culture 

• Legal rights and the system 

• Fathers 

• Technology 

• Medicine 

• Education 

For more information contact: 

Cheryl Dinnell, (702) 784-4921, ext. 2352 

or cdinnell @ scs.unr.edu 



36 



INSITE: 

A HOME-BASED MODEL FOR 

INFANTS, TODDLERS, & PRESCHOOLERS 

WHO ARE SENSORY IMPAIRED 

WITH OTHER DISABILITIES 

The training is for professionals who work 

with families and their children 

who are sensory impaired 

Six-day training to be held in El Paso 

NOVEMBER 18 & 19, 1999 

DECEMBER 9 & 10, 1999 

JANUARY 20 & 21, 2000 

Six-day training to be held in Austin 
MAY 1- 6, 2000 

Contact Gigi Newton, Texas Deaf-Blind Outreach 

Texas School for the Blind and Visually Impaired 

11 00 West 45th 

Austin, TX 79756 

(512)206-9272 

newton_g@tsbl .tsbvi.edu 



Parents as Case Managers Seminar 

February 26 - 27, 2000 
Galveston, Texas 

This seminar is full of information for individuals with 
disabilities, their families, educators, caregivers and 
professionals. Some information is also applicable to 
the needs of the elderly infirmed. 

For registration information, contact Norma Archer at 
(281) 807-4663 or (281) 315-8811. The seminar in- 
cludes a 400-page resource manual provided by a 
grant from the Texas Planning Council on Develop- 
mental Disabilities. 

Topics include: special needs trust, qualifying for So- 
cial Security Disability Income and SSI, guardianship, 
Social Security Work Incentives, and more. 



The TSBVI Website at <www.tsbvi.edu> 

is constantly being updated. Check it out today 

for new information about teaching children 

with visual and multiple impairments. 



REGIONAL WORKSHOPS 

Re gion 1 Education Service Center 
12/10/99 - Braille Strategies & Techniques 

Location: McAllen - Doubletree Hotel 
Registration Deadline: 11/29/99 
Presenter: Debra Sewell, TSBVI Outreach 
Audience: VI Teachers 

ESC Contact: Peter Graves at (956) 383-561 1 
Braille strategies and techniques will be explored and 
the new braille curriculum from Texas School for the 
Blind and Visually Impaired will be introduced. 

1/28/00 - Advanced MegaDots 

Location: Region 1 ESC - AT Lab 
Registration Deadline: 1/14/00 
Presenters: Linda Chromaster & Peter Graves 
Audience: VI Teachers 

ESC Contact: Linda Chromaster at (956) 383-561 1 
Participants must be experienced with MegaDots soft- 
ware. Training will cover import/export of documents, 
style sheets, find & replace, spell check, textbook for- 
matting, rules files, tabs & tables, use of clipboard, and 
foreign languages. 

2/15/00 - Advanced Abacus 

Location: Region 1 ESC 

Registration Deadline: 2/01/00 

Presenter: Debra Sewell, TSBVI Outreach 

Audience: VI Teachers 

ESC Contact: Peter Graves at (956) 383-561 1 

Advanced strategies and techniques will be introduced 

for the instruction of abacus skills to VI students. 

2/22 - 24/00 - Integrating the TEKS 

Location: Region 1 ESC - Starr Room 

Presenters: Region 1 ESC Staff 

Audience: Elementary Teachers 

ESC Contact: Harold Mosher at (956) 383-561 1 

Two-day workshop, with a third day follow up 

inservice to assist teachers in developing interdisciplinary, 

thematic lessons to meet TEKS Student Expectations. 



37 



2/29 - 3/2/00 - Integrating the TEKS 

Location: Weslaco- Victoria Palms Convention Center 

Presenters: Region 1 ESC Staff 

Audience: Elementary Teachers 

ESC Contact: Harold Mosher at (956) 383-5611 

Two-day workshop, with a third day follow up inservice 

to assist teachers in developing interdisciplinary, thematic 

lessons to meet TEKS Student Expectations. 

Re gion 2 Education Service Center 
1/17/00 - LIFE - The Syracuse Curriculum for Stu- 
dents with Moderate/Severe Disabilities 

Location: Region 2 ESC 

Presenters: Debbie Bravenec and Susan Matthews 
Audience: Teachers of students with 
moderate or severe disabilities 
ESC Contact: Debbie Bravenec at (361) 561-8525 
Participants will learn strategies for evaluating & revis- 
ing IEPs; practice writing functional, measurable IEP 
goals; become familiar with the basics of effective room 
arrangement; learn strategies for planning and imple- 
menting activity-based lessons; review skill sequences 
for teaching functional academics; and explore possible 
assistive technology solutions. 

Re gion 3 Education Service Center 
11/12/99 - Toilet Training for Students with 
Autism and other Disabilities 

Location: Region 3 ESC 
Presenter: Maria Bird Wheeler 
Audience: Educators and Parents 
ESC Contact: Mary Scott at (36 1 ) 573-073 1 
Maria brings us an excellent guide through the special 
difficulties encountered when toilet training an indi- 
vidual with autism. Her book brings over 200 toilet 
training tips, 50 case examples from which you can 
learn, and 40 "cautions". 
Registration Fee: $20 (covers the price of the book) 

11/19/99 - Itinerant Vision Teacher Meeting 

Location: Region 3 ESC 

Presenter: Brian Jones 

Audience: Vision Teachers 

ESC 3 Contact: Brian Jones at (361) 573-073 1 

In this meeting vision teachers will have an opportunity to 

share ideas about working with students who have visual 

impairments. The discussion will include issues related to 

ECI and deafblindness. 



11/17/99 - The Nuts & Bolts 
of Transition Planning 

Location: Region 3 ESC 

Presenter: Nancy Hunter, Transition Spec, ESC 20 
Audience: VACs, Transition Specialists and Second- 
ary Diagnosticians for students grades 7-12 
ESC Contact: Sandi Baecker at (361) 573-073 1 
A discussion of important issues in transition planning 
for VACs and Transition Specialists. Topics will focus 
on the development of the FTP, federal legal issues in- 
volving transition, transition indicators on the DEC, 
courses credits, and TEKS. 

Re gion 4 Education Service Center 
12/2 - 3/99 - "Where Do I Begin?": A Problem- 
Solving Approach to Address the Needs of Chil- 
dren with Autism Spectrum Disorder (ASD) 
Location: Region 4 ESC 
Presenter: Denise Sawan Caruso, CCC-SLP 
Audience: SLPs, Educational Diagnosticians, School 
Psychologists and Teachers of all levels 
ESC Contact: Elaine Bergman at (713) 744-6597 
Are you constantly seeking problem-solving strategies 
for children with autism spectrum disorders? This two- 
day workshop will discuss the ASD/PDD spectrum 
and the variability of needs for this population of children. 
Registration Fee: $50, Non-Region 4 Fee: $75 

12/7/99 - Administrative Issues: Supports & Ser- 
vices for Students with Complex Health Care Needs 

Location: Region 4 ESC 
Presenter: Janet Little Horton 
Audience: Campus and District Administrators, Su- 
pervisors and Coordinators, K - 12 Educators and 
School Nurses 

ESC Contact: Susan Parker at (7 1 3) 744-6398 
Registration Fee: $20, Non-Region 4 Fee: $30 

12/8 - 9/99 - Consider The Possibilities: 
Every Move Counts 

Location: Region 4 ESC 
Presenter: Jane Korsten, CCC-SLP, 
Independent Consultant, Overland Park, KS 
Audience: Staff working with students using assistive 
technology, SLPs, Educational Diagnosticians and re- 
lated service staff 

ESC Contact: Angela Standridge at (7 1 3) 744-683 1 
Registration Fee: $50, Non-Region 4 Fee: $75 



38 



Re gion 7 Education Service Center 
12/10/99 - Adaptive Technology Made Simple 

Location: Region 7 ESC - Building 1 , Preview Center 

Presenter: Don Patterson, Lufkin ISD 

Audience: VI & Classroom Teachers, Paraprofes- 

sionals and Parents 

ESC Contact: Susan Bassham at (903) 984-307 1 

This workshop will include a discussion on Adaptive 

Technology for VI students and how it can be made 

simple. Participants will install software and receive 

hands-on instruction on basic keystrokes needed for 

accessing the adaptive technology. 

Re gion 20 Education Service Center 
1/20 - 21/00 - Assessment & Treatment 
of Feeding Disorders Workshop 

Location: Region 20 ESC - Conference Center 
Presenter: Sandy Mader, M.A., CCC-SLP 
Audience: Speech Pathologists, Teachers, Teacher 
Assistants, Parents and related services personnel 
ESC Contact: Britt Green at (210) 370-543 1 
Neuro-developmental treatment focuses on inhibiting 
abnormal movement patterns while facilitating normal 
movements. This program focuses on diagnosis and 
treatment of oral motor problems and swallowing dis- 
orders associated with cerebral palsy. Participants 
learn to facilitate more normal spoon feeding, cup 
drinking, biting and chewing, and selection of appropri- 
ate foods, utensils and positioning. Children will be 
present to demonstrate appropriate techniques. 
Registration Fee: $25 

1/25/00 - Assessment for Transition Planning 

Location: Region 20 ESC - Conference Center 
Presenter: James Patton, Ph.D., UT Adjunct Profes- 
sor, Director of Development at Pro-Ed Corporation 
Audience: Educational Diagnosticians and licensed 
specialists in school psychology 
ESC Contact: Dee Dee Lewis at (210) 370-5478 
This workshop will present a thorough review of the 
theory and practice of transition planning for individual 
students. By using the Transition Planning Inventory 
(TPI) it is possible to identify areas of transition 
strengths and needs in a manner which is comprehen- 
sive and guides further assessment, planning, and/or 
linkage to services. The process uses formal and infor- 
mal methods and includes as part of the assessment 
team the student, the family, and school/community 
professionals. Knowledge, skills, and behaviors are 



evaluated in each of the eight planning areas including: 
employment, further education/training, daily living, lei- 
sure activities, community participation, health, self-de- 
termination, communication, and interpersonal rela- 
tionships. Each participant will receive a copy of Tran- 
sition Planning Inventory: Assessing Transition 
Needs, authored by the presenter. 
Registration Fee: $25 

1/31 - 2/1/00 - Seating & Access II - Those Stu- 
dents Who Grow Up! 

Location: Region 20 ESC - Conference Center 
Presenter: Karen Kangas, OTR 
Audience: Teachers, Occupational and Physical 
Therapists and Speech Pathologists 
ESC Contact: Britt Green at (210) 370-543 1 
With students who are non-speaking, have physical 
disabilities, require alternative access for augmentative 
communication, power mobility, and other assistive 
technology there are finally systems at work. With ap- 
propriate systems students grow and change. Should 
the system of seating, access, and technology be repli- 
cated or changed? How can we make this compli- 
cated transition work? This workshop will explore 
supporting the continued growth and changes of these 
students and facing the complicated issues involved. 
Students will be used as part of the assessment pro- 
cess. Please call Britt Green if you have a student who 
would benefit. 
Workshop Fee: $25 



Job Announcement 

Spring Branch Independent School District 
is looking for a Vision Teacher 

SBISD is looking for a Vision Specialist who has at 
least a Bachelor's degree in a related field, previous 
teaching experience, a valid Texas teaching certificate, 
the ability to work effectively with both adults and chil- 
dren, and the physical capacity to assist students with 
physical disabilities. 

Inquiries should be made to: 

Personnel Department 

Spring Branch ISD 

955 Campbell Road 

Houston, Texas 77024 

Phone: (713) 464-1511; Fax: (713)365-4879 



39 




published quarterly: February, May, August, and November 

Contributions to the newsletter are always welcome. 
Articles can be mailed or e-mailed to section editors at: 

TSBVI Outreach 
1100 West 45th St. 
Austin, TX 78756 

FAMILY- Jean Robinson (512) 206-9418; robinsonJ@tsbl.tsbvi.edu 

PROGRAMMING - Ann Rash (512) 206-9269; rash_a@tsbl.tsbvi.edu 

and Gigi Newton (512) 206-9272; newton_g@tsbl.tsbvi.edu 

SYNDROMES/CONDITIONS - Kate Moss (512) 206-92224; moss_k@tsbl.tsbvi.edu 

NEWS «. VIEWS - Jim Durkel (512) 206-9270; durkelj@tsbl.tsbvi.edu 

Deadlines for articles are: 

December 1st for the Winter edition 

March 1st for the Spring edition 

June 1st for the Summer edition 

September 1st for the Fall edition 

Editor-in-Chief- Kate Moss (512) 206-9224; moss_k@tsbl.tsbvi.edu 
Layout Editor - Craig Axelrod (512) 206-9435; axelrod_c@tsbl.tsbvi.edu 
Production Editor - Berta Green (512) 206-9314; green_b@tsbl.tsbvi.edu 
TCB Editor - Edgenie Lindquist (512) 459-2579; edgeniel@tcb.state.tx.us 

The audio version of SEE/HEAR is provided by 
Recording for the Blind and Dyslexic, Austin, TX. 

SEE/HEAR is available in Spanish and English on TSBVI's website at <www.tsbvi.edu>. 
IF YOU NO LONGER WISH TO RECEIVE THIS NEWSLETTER, PLEASE CALL (512) 206-9103. 

The Outreach Programs are funded in pan by IDEA-B Discretionary, IDEA-B Formula, and IDEA-C Federal grants. Federal monies provide 73% of the total. Federal funds are 

administered through the Texas Education Agency, Division of Special Education, to the Texas School for the Blind and Visually Impaired. Texas School for the Blind and Visually 

Impaired does not discriminate on the basis of race, color, national origin, sex, religion, age or disability in employment or the provision of services. 



Texas School for the Blind and Visually Impaired 
Outreach Department 
1100 West 45th St. 
Austin, Texas 78756 



NON-PROFIT ORG. 
U.S. POSTAGE PAID 
AUSTIN, TEXAS 
PERMIT NO. 467 



90Z0fr M 'aTIIASIQOl 

"3A\? IHOJMNVHJ Z.98T 

ONIia I/_ TOOHDS AMOfUNaS 

NOSNHOJ? AHIVD 



SEE/HEAR 



A QUARTERLY NEWSLETTER ABOUT VISUAL IMPAIRMENTS AND DEAFBLINDNESS FOR FAMILIES AND PROFESSIONALS 
A collaborative effort of the Texas School for the Blind and Visually Impaired and Texas Commission for the Blind 



Spring 2000 



Volume 5, No. 2 



Table of Contents 

FAMILY 

Franky's Story. 2 

No Small Miracle 4 

Dreaming of Another World 5 

Visions of Parenting: More Alike Than Different 6 

My Favorite Relative 8 

Interesting Websites -Check 'Em Out 8 

PROGRAMMING 

A Different Way of Working with Early Language 9 

What a Concept! 10 

Second Language Acquisition and Children with Visual and Hearing Impairments 14 

Check Those Hearing Aids Every Day! 

Making It! Successful Transition Competencies for Youth with Visual Disabilities 

SYNDROMES/CONDITIONS 

Central Auditory Processing Disorders 

NEWS & VIEWS 

Texas Children's Health Insurance Program (CHIPS) 3 1 

Champus Expands Benefits 31 

The Importance of Reality-Based Services 32 

Short Classes at TSB VI Expanding 34 

Helen Keller National Center National Registry. 34 

Over 550 Congregations from 50 States Have Committed to Welcoming People with Disabilities 35 

Bits and Pieces 36 

Classified 38 

Kate's Corner 



If you are receiving this newsletter, congratulations! You are one of the approximately 1,900 individuals who 
remembered to send in your update for our new mailing list database. We are pleased that you took the time to send 
it in, and we think this new database will be much more accurate than our previous one. However, our old mailing list 
had over 7,000 addresses. Now, we know that many of those were old addresses, and we know that some people no 
longer want to receive SEE/HEAR for one reason or another. We also think that many people who did want to 
continue getting the newsletter didn't get an updated form mailed to us. Since you did, we need your help. 

If you are a teacher, caseworker, or other professional working with families of children with visual impairments or 
deafblindness, please check with those families and ask them if they received this newsletter. Also check with your 

Kate's Corner - continued on page 24 



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Franky's Story 

By Connie Vasquez, Parent, Mc Allen, Texas 

Editor's note: Each time I hear a family's story I learn more about the gifts of life. I think it is important 
that we share these stories with, not only other parents of children with disabilities, but also teachers, doctors, 
legislators and community members. Those of us who are professionals in the field of special education some- 
times forget that the general public has little, if any, experience with disabilities. To them the world of disabili- 
ties and chronic illness is a foreign, scary place. They need to understand that it does not need to be. Children 
with disabilities and their families can have better lives if we care enough to hear them and provide the support 
they need. 

We were living in McAllen, Texas, when we found out I was pregnant with our first child. Like most first time 
parents, we were excited and a little nervous. The pregnancy seemed to go by normally. I had the usual miseries, and 
I got a virus I couldn't seem to shake about the third month. I didn't even mention it to the doctor. I figured the extreme 
fatigue was just a result of pregnancy, and the chronic sore throat was just allergies. 

I prayed that there would be nothing wrong with the baby. We had all the usual tests and ultrasounds and everything 
seemed normal. Yet something told me that something was wrong. I guess it is that sixth sense we sometime get. 

On April 15,1 993, Franky was born after a normal labor and delivery at 38 weeks. When he was brought to me, 
I was surprised at how hard it was to change his little shirt; his arms were so stiff. I chalked it up to inexperience. The 
next day my doctor came in to tell me that Franky's head was too small for his body. She was hoping that the bones 
in his skull had fused together and that an operation might separate them. I thought to myself, if this is the best-case 
scenario, what could be the worst? 



After a MRI was done, the neonatologist came in to see me. He told me that there was brain damage and they 
didn't know what problems Franky would have. He mentioned epilepsy, cerebral palsy, blindness, deafness, etc. He 
said that we would have to wait and see. He also told me that it wasn't fair for him to have to break the news to me, 
since he didn't know me. I guess he thought it was fair for me to hear the news! 

Of course, I spent a lot of time crying. I had to break the news to my husband when he came. I wish he could have 
been there when they told the news to me, but I guess the doctors never thought of that. The nurse saw me crying and 
told the hospital's psychologist. She came to see me, and asked what was wrong. When I told her, she just told me 
to call if I needed anything. There was no sympathy, and she never came back to check on me. I guess she wasn't 
qualified for real problems. 

Just as I was to be released, another neonatologist came in to see me. He very callously told me that my son would 
never be anything but a vegetable and would never know us. He advised us to take him home and wait for him to die. 
He said that Franky would probably die in his sleep of SIDS. He added that we needed to come by his office the next 
day to give him our decision as to what we would do when we found him dead. He also told us that Franky had a 
urinary tract infection and would need to stay in the hospital for 7 to 10 days. I asked to see him before I was 
discharged. He told me that was impossible because Franky already had been transferred to an intermediate neonatal 
nursery. I was naive enough not to fight him. 

During this time, the only comfort we received was from my personal physician, Dr. Bertha Medina. After the 
neonatologist left, she started crying. She told us that her first child had died from a brain defect. She cried with us; 
then gave us some advice that we have never forgotten. She told us that this crisis would either make or break our 
marriage, and we had to make sure that it brought us closer together. 



We found out that the CMV virus, which I had never heard of until then, presumably caused the brain damage. It 
most likely happened when I felt so sick at the end of the first trimester. No one caused it, and no one could have 
prevented it. Even if we had known I had the virus, the doctor could not have done anything but suggest an abortion, 
which we are completely against All it would have done was make us dread his birth. I am glad we did not know until 
after he was born, but relieved that we found out right away. 

Over the next few days we broke the news to our family and friends. My mother-in-law, who came to help me said, 
"He is family* and we love him no matter what problems he may have." We got lots of moral support from our church 
even though we had been members for only a short period of time. We got mixed reactions from our friends. Some 
were sympathetic and caring; some were indifferent. Others felt like somebody was to blame even though there was 
no evidence of it. They said that the doctor had to have done something wrong. One of my closest friends even 
suggested that it was my fault. We found out who our true friends were. 

We found out that the stiffness and difficulty in dressing Franky was due to cerebral palsy. When he was three 
months old, we found out he was blind except for a little peripheral vision. He is deaf in one ear, but the other ear is fine. 
He has profound mental retardation. 



5 



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When Franky was about six weeks old, he started screaming day and night. We thought it was colic, but it didn't 
go away. When he was nine months old, he had his first visit with a neurologist. He told us that the screaming was 
normal for a child in Franky's condition and recommended trying Klonopin to calm him. We hesitated to drug him as 
he had just started smiling, but we decided to try it for a few days. After a trial period, the only complaint we had was 
why didn't someone prescribe it before? One of his therapists was opposed to this drug therapy, but she didn't have 
to live with him. He became a happy child and began to laugh at every little noise. Our lives changed overnight. 

Franky's muscle tone is extremely tight, and the cerebral palsy affects every part of his body. We would spend all 
day trying to feed him. When his was three years old, we made the difficult decision to give him a feeding tube. We 
didn't want to take the easy way out Although it did make feeding a lot easier, Franky developed severe reflux. Every 
time he gets a cold, he gets a vicious cycle of congestion, coughing, and reflux, which causes more coughing and more 
reflux. Now we have found that reflux itself causes congestion. 

Franky has a neurogenic bladder; so I have learned to catheterize him. I have also learned to suction him, change 
his feeding tube and do all kinds of things I never expected to do. Sometimes I feel like a doctor. Franky takes eleven 
medications every day for reflux, muscle relaxation, bladder spasms, asthma, seizures, etc. When he is sick, he takes 
even more. Last year I filled more than two hundred prescriptions for him in a twelve-month period. 

Now that Franky is seven years old we thought that the threat of SIDS had gone away. This year we found out that 
it has actually gotten worse. A sleep study showed that he has severe apnea. His chin is receded and his palate 
extends way back into his throat, which narrows his airway considerably. If he isn't in just the right position, he will 
stop breathing, even when he is awake. He has an expensive wheelchair that he is unable to use. We have never been 
able to adjust it to a position that doesn't restrict his breathing. We have been told that it is likely he will die quietly in 
his sleep. The ear, nose, throat specialist told us that the only solution is a tracheotomy. However, he warned us that 
because of Franky's sinus problems, the only feasible way for him to have a trach would be to institutionalize him. That 
is not even a possibility for us. 

My experience with the medical profession has been mixed. We have lived in three different parts of the country 
since Franky was born; so we have had various experiences with doctors and nurses. There are some very compas- 
sionate doctors and those who are hard and almost cruel. Many are indifferent. I guess they don' t know how to react 
to a child who is not "normal." Franky goes to a large clinic with several pediatricians. Because he is on Medicaid our 
options are limited. We ended up seeing a physician's assistant, Ms. Jeanne Russell. At first I was hesitant but after 

3 



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four years we feel very comfortable with her. She is very knowledgeable and doesn't hesitate to ask the pediatrician's 
advice. However, we have found that if she doesn't know, the doctors don't know either. I mention this because 
children with special needs sometime require more time and attention than a busy pediatrician can or is willing to give. 
With Ms. Russell and other physician's assistants I have dealt with, I always feel like they have more time to spend with 
me. Ms. Russell is always willing to listen to my opinions and questions. I don't feel like a bystander. 

We have lost and gained many friends over the years. The friends we have are those who are there for us. No, they 
don't always have the time or the ability to help with Franky's special needs. Sometimes they are nervous around him 
and don't know the right thing to say at the right time; but they give us a shoulder to cry on, pray for us and help with 
our other two children. They don't say, "I know what you are going through," because they don't know. Our lasting 
friends are there for us when we need them. 

A pediatrician recently offered to help us place Franky in an institution. I know that some people have no choice, 
and I cannot judge those who have had to make that difficult decision. But as long as I am able to take care of Franky, 
he will be at home with us. 

We love Franky very much. When he was born, I could not imagine living with a helpless child who would remain 
in diapers. It was a comfort to me that he wouldn't live long enough for us to face that reality. Today we cannot imagine 
our lives without him. I know that some day he will be in a better place, where there is no suffering. Until that day, we 
will enjoy every minute we have with him. 

Please feel free to contact Francisco and Connie Vasquez by phone at (903) 758-3 1 89, or by mail at 905 Dudley 
Street in Longview, TX 75602. 



No Small Miracle 

By Cindy O'Dell, Parent, Amarillo, Texas 



With the hustle and bustle of life, sometimes I forget to take time to be grateful for the seemingly "ordinary" things. 
My children, Shane and Breezy, have an uncanny knack of jogging me into reality or setting me back on my heels to 
remember my gratitude for the "ordinary" or little things life offers. 

My daughter, Breezy, is hearing, vision and other health impaired. She is an extraordinary child. Doctors predicted 
that she would not see her first birthday. We celebrated her 10th birthday this summer, and the miracles never cease. 

Our home lies in a perfect location to see many of the airplanes and other aircraft approach the Amarillo Interna- 
tional and Tradewinds airports (an airport for smaller aircraft) and the Bell Helicopter plant which produces the V-52 
Osprey. 

One cool, fall evening, Breezy came running and screaming into the house from our garage. Quickly, I ran to see 
what was wrong. She grabbed my hand and practically dragged me outside. 

As we reached the end of the driveway, she began screaming and jumping up and down. The dark of night had 
provided the perfect backdrop for Breezy to see airplanes flying overhead. Her excitement never wavered as she 
witnessed three military planes, two private planes, a commercial jet and the V-52 Osprey. As each plane flew within 
close range over the field behind our home, Breezy began to tremble she was so stimulated by such a rare sight. 

These sights are nothing new for the rest of the family. For Breezy, it was one of the most thrilling sights she had ever 

4 



seen. The sunlight during the day prohibits her from viewing the clouds in the sky, to say nothing of an airplane. The 
virtually pitch-black sky coupled with the airplanes' bright lights from the landing gear opened a new window for 
Breezy's viewing pleasure. 

While Breezy was busy basking in the events that most of us consider "ordinary," her brother pulled his car into the 
driveway. Breezy dashed to the driver's side door and frantically tugged at her brother's arm, practically dragging him 
to the end of the driveway to share this momentous occasion. 

As Shane and I stood watching the night sky as witness to Breezy's new adventure, we wondered just how often 
we must take "ordinary" things for granted. Her enthusiasm was contagious and once again, my daughter made me put 
other things aside to take time to be grateful for the little things in life. 

With a million things left waiting for me to accomplish, I stopped to say "Thank you, God, for granting such an 
'ordinary' miracle." 



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5 



Dreaming of Another World 

By Cathy Allen, Parent, Mesquite, Texas 

It's a mother's nature to dream of her children's future. In the beginning the dreams fill us with contentment and 
hope. And because they make us feel so good, we embrace the dreams in our hearts. Forgetting their fragile nature, 
we determine that they will be real. As our children grow we must be careful to adapt those dreams to the realities of 
our children's individual preferences, unique personalities, and circumstances of life. 

"Of course! This is obvious!" you may say. In my own experience, however, I have found that getting my heart to 
accept the realities my mind sets forth is not as easy as it is obvious. 

Being a little on the creative, eccentric side, the dreams I have for my children may be a little different in nature than 
some. I think you'll agree, however, that the dreams that flow from my heart and the dreams that flow from your heart, 
although different, awake within each of us an equal amount of pleasure. 

I want to show my children the simple beauty of nature and of music, the enjoyment of laughter and a warm 
embrace. Surely these things will enrich their lives whatever vocational path they choose to take. With my boys, I sang 
to them as babies and now give them musical instruments to explore and enjoy. I take them out on the porch at night, 
snuggled together in our pajamas and wrapped in blankets, to watch nature's electrical light-show during a thunder- 
storm. We hike through wooded areas searching for vines to swing on or just the right walking stick. 

This is life as I choose to live it — expressively, experientially. 

My dreams were threatened and their narrowness was challenged with the birth of my daughter Rachel, who is now 
4 years old. Hearing impaired, visually impaired, with developmental delays and other medical conditions, Rachel 
preferred the safeness of indoors. Her world consisted of sterile, protective environments. Although she was sur- 
rounded by and touched with hope, tenderness and intense love, there were also traces of apprehension and grief in 
every encounter. 

I didn't know how to draw her into the life and personality of our family. How could I help her truly experience life 
when she has minimal vision and hearing? 






I watched the vision and hearing teachers attempt to define the world as it is to her. (What does she see, hear, 
respond to?) I started out hopeful, but ended up discouraged to discover how small her world really was. But one 
thing I knew. I would have to enter into her world before I could guide her into my own. I swung between optimistic 
^ denial and hopeless realism. Neither was a place I could stay for long because each soon evicted me and banished me 
to the other extreme. As I struggled to find the secret gate that would allow me entrance into her world of 
deafblindness, gradually I came to a place of optimistic realism. 



& 



I understood, at least in part, that her sensory limitations brought her world closer to her. She became intimate with 
pleasures even more simple than I had attempted to instill in my boys. 

Whereas with the boys I lay outside gazing up at the stars dazzling in the clear night, with Rachel I lay on the floor 
cradling her underneath flashing Christmas lights in a darkened room. 

Whereas I had taught the boys many songs and introduced them to music of many styles, with Rachel I found 
intense delight in the beauty and expressiveness of her tiny hands signing 'Twinkle, Twinkle, Little Star." 

Whereas with the boys I encourage their sense of adventure by prodding them to catch a cricket with their bare 
hands or climb to the top of a mountain to see what's there, with Rachel I am proud of her courage as she cautiously, 
but voluntarily, reaches out to touch a bush to discover just what that green thing is. Or when she opens a cabinet door 
and, after studying the dark recess, reaches into its depth, to determine if anything fills the void. 

Recently, Rachel and I sat on a bench swing overlooking a lake as the sun set. Rachel was oblivious to the unique 
strokes of purple, pink and orange coloring the sky in the distance. For a moment, a twang of grief entered my heart 
at the thought of the peacefulness she was missing because she could not see the setting sun. 

But then, impatient with my distraction, her little hands on either side of my head turned my face toward her own. 
She drew very near as if to study the distinct design of my features and understand the expression she found there. 
Then, pointing to a spot on my cheek, she planted a gentle kiss in that very place and did the same on my other cheek. 
Placing her nose on mine, in a familiar gesture of affection, we rubbed noses as I said out loud, "Nosey, nosey, nosey." 
Smiling her bright smile, she clapped her hands and then threw her arms around my neck, squeezing tightly — express- 
ing her love and pleasure. 

Rachel may never see a magnificent sunset, but she can 'see' my face and feel my warm embrace. It is my dream 
that when she comes to me, she will always find a glimpse of sunshine in my smile and experience the peacefulness of 
the setting sun in my touch. 



Visions of Parenting: More Alike Than Different 

By Ron Lucey, TCB Consumer Resources Coordinator 

When asked to write about my experiences in being a parent with a vision impairment, I admit to having a real 
identity crisis. I had never thought of myself as anything but "Dada." My two-year-old daughter, Mary, was the first 
one to utter those wonderful syllables, and I was captured forever. William Charles, born in December, will add his 
own verbal version of my name to his vocabulary later this year. I can hardly wait. I'm holding on to Dada as long as 
possible. Too soon they will be calling me Dad by way of letting me know they are all grown up. 

My experiences as a parent and the experiences of parents without visual limitations are more alike than they are 
different. My wife, Dixie, and I have all of the challenges other parents have. After Mary was born, Dixie and I chose 



to reschedule our lives so that our daughter could be at home rather than in full-time day care. Dixie stays at home 
during the week and works weekends at TSBVI. I work during the week and stay at home weekends. Evenings, 
Friday outings at Taco Cabana or Chuckie Cheese, and Sunday morning brunch are our favorite regular opportunities 
to reconnect as a family. 

I can certainly attest to the fact that two children are more work than one ! Mary was what we call an "easy baby." 
She slept through most ofthe night and cried only on occasion. In contrast, William has a much stronger temperament 
and enjoys loudly expressing his opinions when we would prefer to be sleeping. The dull ache from a lack of 
uninterrupted sleep was my constant companion for a while. Also, having the support ofthe other parent while both 
children are crying and in need of simultaneous diaper changes is ideal, but due to our opposite work schedules, this is 
an often elusive situation for Dixie and me. 



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5 



One month after William was born, Dixie went out of town on business, leaving me alone for the first time with both 
children. The previous day, I had irrationally agreed to participate at home in an all-day telephone conference call as 
part of a work task force. I became a real life "Mr. Mom" from the movie of the same name. All day I had no time to 
shave or shower, and the flannel shirt I was wearing had served as a burping rag for my son's frequent bottle feedings. 
Buckets of dirty diapers, empty baby bottles, toys, and unwashed dishes littered the domestic landscape of our home 
like a scene from a Civil War battlefield. By midnight, when my wife returned from her trip, I had just finished returning 
our home to its previous state of order and domestic bliss. Eventually, the job of parenting became a little easier as I 
readjusted to meet the needs of two children. 



During weekends before the birth of William, Mary and I often explored our quiet, shaded AUandale neighborhood 
with trips to Northwest Park's playground. We always ended our Saturday mornings at the local bakery for bagels, 
coffee and juice. All of these favorite activities were not impacted in the least by the fact that I am visually impaired and 
don't drive a car. Mary and I just wore out the rubber tires on our infant stroller more quickly than other families. 

On occasional weekdays, Dixie has out-of-town business travel for a second part-time job. When this occurs, I 
muster my final reserves of patience to deal with public transportation. The use of taxicab vouchers allows me to take 
my daughter to her doctor's appointments and to her Mimi's house for occasional childcare. Mary is simply growing 
up with the notion that Mama drives the family car and I pay money to people who drive taxis. In her children's book 
she loves to point to the picture of a yellow taxi and say "Dada." 

During reading time in our home, we all share in the bonding experience of a well-worn children's book. I have 
been fortunate that my daughter's favorite books are the "Spot" series by Eric Hill. The Spot books are rich with 
manipulative flaps that hide all of Spot's animal friends. The jumbo bold print is easy for me to read without a low vision 
device. I occasionally must use my hand-held magnifier to read the smaller print in other books. At first, this behavior 
confused my daughter, but she has come to accept it as part ofthe reading routine. 

Throughout my day I use adaptive skills for parenting without consciously thinking about them. I can recall giving 
my son a bottle at 3 :00 a.m. in near total darkness and placing my fingers along his chin and jaw line for proper bottle 
placement When traveling on foot with my daughter through busy intersections, we wait through one cycle of traffic 
lights and cross safely with the next parallel traffic surge. When writing a check at the grocery store, I may fill out most 
of it beforehand with a CCTV and fill in the check amount with a low vision aid at the checkout counter. However, 
these minor adaptations do not change the fundamental essence of parenting. 

Inevitably a person will question how a blind or visually impaired person can safely parent two young children. The 
safety and care of my children are always in the forefront of my mind. Although Dixie might be tempted to testify that 
I have compensated for my vision impairment with being overly safety conscious and attentive to minor details, I think 
my basic personality may be the stronger force behind my carefulness. We have what every parent should have — 






5 



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smoke detectors, fire extinguishers, first aid kits, and child safety devices. Reasonable housekeeping practices and 
always being aware of my children's environment and what they are doing, keeps me reassured that they are safe. 

At the end of a long day filled with work and family activities, parenting my two young children may not be any 
different than parenting for any other dad. I accept that other parents who are blind may use different adaptive skills. 
However, I believe that any person who is confident in their independent living skills and emotionally prepared for 
parenting can be successful at this most challenging and rewarding full-time job. 



My Favorite Relative 

By Patricia Mejia, Sister, Kingsville, Texas 

My favorite relative is Riqui Mejia; he is blind. There are so many things I like about my brother. Here are mostly 
all the things that make my brother my favorite relative. 

My brother is tall and five years old. He weighs about 28 or 29 pounds. Don't you think that he's a little too skinny 
for a five-year-old? His eyes are dark blue and light blue. He has black hair and big feet. 

When he's around other people, like my friends and cousins, he likes to act silly and be cute. I like to play outside 
with my brother in my spare time. We play ring around the roses and swing on the swings. 

His favorite thing to do is jump on top of the sofa. When he starts to cry, we have to turn on the blender. He also 
likes to walk around a lot. If I go outside, he has to go outside. 

When we are outside cooking in the backyard, I play basketball. Riqui love to play with round balls. So I pick him 
up, sit him on my shoulders, tell him to throw, and he throws the ball. He misses, but we keep on trying until he makes 
it. Riqui is cozy as a bear and sweet as honey. When you're in a bad mood, he helps you to be happy again by being 
silly. These are all the reasons why I choose Riqui Mejia as my favorite relative. 



Interesting Websites - Check 'Em Out 



Welcome to HotBraille.com! - http://wwwJiotbraille.com/public/welcomeJitm 

HotBraille is the first and only web-based Braille transcribing service. Now you can send FREE BRAILLE in the 
mail in 1 9 different languages to anywhere in the world, all from the comfort of your web browser! Once you sign-up 
you may access other e-services as well. HotBraille's Member Directory is a place where you can meet and interact 
with other Members who share your interest in Braille and the blindness field. HotBraille is committed to growing its 
services and resources aimed at making the Internet a better and more valuable network for blind and sighted users 
alike. Read more about HotBraille in their Frequently Asked Questions section. 

HANDS - http://maelstrom.stjohns.edu/archives/handsJitml 

In the words of HANDS's founder, Chris Peterson, "HANDS is a support list primarily aimed at blind high school 
and college students. Pretty much anything goes as long as members feel the need to discuss it. We don't encourage 
political announcements or commercials, but if they happen they happen. The main thrust of the list is to let blind 
students exchange techniques for dealing with student life and to allow them to vent their frustrations, but we've been 
known to discuss a good movie or book from time to time, too." 



8 



A Different Way of Working with Early Language 

By Dr. Wendy Drezek, Infant Teacher, San Antonio, Texas 

Children normally learn language through their interactions with people and things in the world. They learn the give 
and take of communication. They learn that language gets them what they want. They learn what words mean by 
watching what is happening while adults talk. They get feedback from others through their facial expression, posture 
and proximity, as these make communication more or less effective. All this learning depends on vision. 

When vision is poor, children get less information about the world. They get less feedback about the effect of their 
communication on others. They may be more passive and interact less with people and things on their own. Children 
with poor vision are less aware of distant objects, and request and refer to them less often. Adults try to help by doing 
more for the children so the children have less need to initiate communication. Meaning is less clear when the 80-90% 
of information that is visual is absent or unclear. So, children with visual impairment frequently have weak language. 

ASSESSMENT 

In traditional ways of assessing early language, children are asked questions or required to identify objects or 
pictures. They don't have opportunities to generate their own responses. Their responses are prestructured by adults. 
These approaches may assess a child's ability to imitate responses or follow directions, but they don't access what the 
child can initiate to change the environment. 

On the other hand, totally unstructured collections of language have a different limitation. For example, you can 
keep a running log of the child's utterances, and analyze it only for length, syntax and meaning. If you don't consider the 
appropriateness of the language to the situation, however, the child's ability may be overrated. Children with visual 
impairment frequently use long correct sentences without appropriate content. Repeated questions and echoed 
speech are examples of correct structure with inappropriate content The problem of prestructuring can again occur if 
adults cue all the language. 

Traditional assessment can be supplemented to address the children's ability to use their language systems without 
adult structure. To assess a child's ability to create language in a situation, a language log using specific guidelines is 
necessary. The observer and child must have shared the activity, for example frosting a cupcake, so the observer 
knows what the content should be. In this situation, two kinds of assessment are useful. First, the observer can booby 
trap some aspects of the activity so the child has to generate new language to get what is desired. (The observer might 
provide a frosting can which is sealed so the child has to request help to get to the frosting.) Then, after the activity, the 
observer and child talk about it, with the observer using 'Tell me about the cupcake." as the only cue to assess what 
information the child can produce. 



3 




s 







IMPROVING LANGUAGE 

The problems with improving language are similar to those of assessment. Much of standard language program- 
ming relies on prestructured responses — answering questions, labeling, imitating, pointing to selected pictures or sym- 
bols, or highly cued responses. While these can be useful parts of a program, the goal of any language program has to 
be a child who can initiate and create communication without adult structure. 

The first step in any language program is to make sure there are things the child wants, so communication has a 
purpose. For many children, such desires are evident. For some children, wants may need to be fostered through 
appealing activities or especially interesting objects. Doing less for a child, and "not understanding" what the child 
wants unless the child communicates, encourage more requesting. To build meaning, children will need systematic 
exploration and activity which pairs language with hands on experience of the available world. Signs, pictures and 
objects can be invested with meaning by being paired repeatedly with action and many sensory experiences. 

9 



Natural consequences are used at the earliest stage of language acquisition to get more output and more specific 
language. A child can choose between a snack or a favorite toy or nothing. Gradually the child will learn to choose the 
symbol or use the word or sign for the desired end. Using "ba" which is used for ball, to try to get acookie, results in 
a physical therapy activity on the ball. "Kuh" gets the cookie. 

Booby trapping, or building in problems that require language to solve them, is one way to encourage the child to 
produce language without cues. Responding to a repeated question by ignoring it, or to an echoed statement by 
responding to its meaning rather than its intention, are natural consequences which make that kind of communication 
less rewarding. If Bob, who wants a cookie, says, "What do you want Bob?" to get the cookie, and no one gives him 
a cookie since the question is addressed to himself, he will learn eventually that an echoed question is not a request. If 
the adult thinks, "I know he wants the cookie." and gives it to him, Bob is learning that an echoed question is an 
appropriate request. In general, any adult interpretation of inappropriate statements as appropriate will weaken the 
child's language. 

It will strengthen language independence more to ask, "What do you want?" at free play, so the child has to use the 
internal system to form a response, than to play 20 Questions and give multiple choices. At the very early stages of 
language, however, choices are essential, and even inappropriate responses may need to be encouraged. For some 
children, consistent responses will need to be identified, developed and refined. 

The language logs can also be analyzed for kinds of language use, weakness in the appropriateness of the language, 
and to assess the depth and overall strength of the child's language. Specific patterns can then be identified and 
addressed. For instance, if Suzy calls a broom a "sweep-it-up" and a watering can a "pour-it-out," it is clear that she 
has trouble relating the function of an object to its label. This can then be addressed in activities in which functions and 
labels are stressed. 

CONCLUSION 

Traditional language assessment and programming may produce an inflated evaluation of the child's ability to use 
language independently. It may be useful to include measures and activities to assess and encourage spontaneous 
appropriate language. 

Editor's note: If you have questions, or would like more in-depth information about this unique approach to 
language development, Wendy can be reached by phone at (210) 493-0939 or e-mail at StanwenDre@aol.com. 



What a Concept! 

By Jim Durkel, CCC-SPL/A and Statewide Staff Development Coordinator 

(with help from Kate Moss, Stacy Shafer and Debra Sewell) 

Texas School for the Blind and Visually Impaired, Outreach 

Communication has three parts. The most noticeable part is the "form." Form is how the communication happens. 
It is the behavior used to communicate. Speech is one communication form. Sign language is another. Crying, using 
objects, using pictures, even falling asleep — all of these are behaviors we do, forms we use, to communicate. 

"Use" is another part of communication. What is the purpose? Is it to share information, direct another's attention, 
request something, ask or answer a question? All of these are reasons why we communicate. 

The third part of communication is called "content." Content is the part of communication that deals with meaning. 
It is noon. I am hungry. I walk up to you, look at you and say, "Lunch?" My voice rises at the end of the word, and 

10 " 



I raise my eyebrows when I say it. Those are the ways I communicate, my forms (we usually use several at once). I 
am using these forms to ask you if you want to have lunch with me. That is why I say that word to you in that way. It 
is the reason I am doing this. But what does "lunch" mean? What is the content? Am I asking if you want to go eat and 
drink somewhere for 2 hours, or am I asking you if you want to go to McDonald's and be finished in 30 minutes? Am 
I asking you to cook this noon meal for me as you have for the last 20 years, or am I offering to cook it for you? You 
and I probably have a shared idea of what "lunch" in this context means. We understand that other people may or may 
not use it as we do. The shared idea is the "content" part of communication. 

This content develops as a result of several things. First, you and I have decided what the word means to each of 
us. This was not taught to us. We "figured out" the meaning. We heard it used at the same time everyday. We did 
something the same way as we heard it (or very shortly after we heard it). More than likely, there were actions, smells, 
tastes, sights, sounds, objects and maybe other people involved in what we did when we heard the word. 

We developed our own meaning or concept for "lunch" based on our personal experiences. Even if we did not hear 
the word "lunch" used, we still developed an understanding of what happens at a noon meal. We discovered how it 
was the same as other meals (we sat at a table, we ate food) and how it was different. (We did not eat cereal like at 
the morning meal, and we usually did not eat as much as at the evening meal.) We developed a concept of lunch. 

Once we had the concept, we paid attention to the form ("lunch"). We heard the word "lunch" every time we had 
our noon meal. Next, we figured out if that form referred to the same concept for all people. Some folks eat "dinner" 
at noon ! Last, we figured out how to use that form in certain ways to get people to fix us lunch or eat lunch with us. 

Children with visual impairments, including deafblindness and multiple impairments, have difficulty developing con- 
cepts. They have difficulty understanding how the world works, how parts of the world relate to other parts, how these 
parts are the same and how they are different. What makes the communication of children with a loss of vision really 
different from the communication of other children, is that many of these children often use communication forms 
without having the content or meaning or concept firmly in mind Often, children with a vision loss are good at hearing, 
remembering, and using words without having a real "gut" sense of what they are saying. I do the same thing whenever 
I try to talk about football. I know the talk, but I can't walk the walk. I know labels ("tight end," "Hail Mary Pass"), 
but I did not have the experience of playing football. I do not really have concepts for these words. 

Many people think of concepts as things like "right," "left," "top," and "bottom." These are a particular type of 
concept having to do with positions in space. But "tree" is a concept, as is "dog," "house," "push," and "work." There 
is the concept of "book" and of "reading." Concepts can also be about events, such as "going shopping" or "visiting 
Grandma." The story of "Snow White" is a concept, and so on. All the words we know, all the language we speak and 
read, have underlying concepts. Some concepts are expressed in one word, like "lunch." Other concepts are ex- 
pressed only by using several words in a specific way, "After I run some errands, I will eat lunch." 

Impaired concept development will impact learning later in life. For example, most teaching after second grade is 
not "hands on." Students are expected to read about and/or listen to the teacher talk about something. For students 
who have good experience-based concepts, this kind of learning is OK. So what if you have never been in an igloo. 
You understand houses, and you understand how various kinds of houses are different and how they are the same. You 
understand that not everyone lives in Central Texas, where ice outside is a rare thing. You understand ice and how it 
can look like a brick. You can read about an igloo and relate what you read to what you know. If those basic concepts 
are shaky, your understanding of what you read will be shaky too, even if you can say all the words, read all the print, 
or read all the braille. 






When I say concepts, many people think, "label." They think we should always be talking to children with visual 
impairments. They think the underlying problem is that children "just need the words." But this is not really true. 
Concept development is delayed because vision is what drives the typically developing infant to move and interact with 

11 






objects. When vision is impaired, often this drive is also impaired. Babies with visual impairments do not handle 
objects in the same way that babies with no vision loss do. They do not explore the environment the same way. They 
also do not see the actions of others well or at all. They cannot rely on vision to give them information to the same 
extent that babies with no visual impairment can. Vision also allows one to see how one piece of the world relates to 
several other pieces of the world. Children with visual impairments have to view their world piece by piece; then put 
it all together into the big picture. Children with no visual impairment can see the big picture first; then look at the 
pieces; then go back to the big picture. For example, a child with no vision loss will see that I am holding a rattle. She 
will look at the rattle and at me, and she gets the picture that the rattle is "attached" to me. A child with a visual 
impairment will hear the rattle, maybe see it, but may not understand that the rattle is "attached" to me. For that child, 
objects appear to float in space, unless we help her get the big picture. All of these things happen during an early time 
of learning called the sensorimotor period. 










i 














a 




o. 







The sensorimotor period was named by Jean Piaget, a French psychologist. He studied how children developed 
concepts and made sense out of the world. He believed that children "constructed" these concepts through active 
exploration and interaction with the environment. Most of this exploration and interaction took place during play. 
Piaget said that the sensorimotor period in most children lasted from birth to the age of 2 years. During this time, 
children learn about their bodies, their own actions and the actions of others. Children also learn about the properties 
of objects and how objects are used. Children begin this learning by accident, then through their own deliberate 
movement, then by watching others. This is a time of developing concepts about how the world works through the use 
of sensory and motor (sensorimotor) skills. 

Jan van Dijk, a Dutch psychologist who works with children with deafblindness, says that all we know can be 
traced back to our actions. He gives the example of asking us to define a castle. We say, "It is where the queen lives." 
He responds, "Yes, tell me more." We say, "It has towers and big gates." If he keeps asking questions, eventually we 
say it is where people eat and sleep and play. And, that eating, sleeping, and playing means using certain objects in 
certain ways. We have used these objects and performed these actions. These are concepts that we usually develop 
during the sensorimotor period. 

Our experiences can give us concepts that are very unique to us. You probably heard the story of the woman who 
called her mother to ask about how to make a roast. Mother told her to get the roast, cut off the end, rub it with oil and 
pepper, put it in a pan, and bake it in the oven for a period of time. The roast was great, and later Daughter asked 
Mother why she had to cut off the end of the roast. Mother said she did not know but that was how her mother did it. 
When they asked Grandmother why they had to cut off the end of the roast, Grandmother said she did that because 
otherwise a roast would not fit into her pan. 

We all have our unique ideas about the world around us. If you use chairs as something to hold on to and push 
around the room to help you walk, your concept of "chairness" may be different than mine. (I think they are to put my 
legs on when I sit on the table.) Children with visual impairments are not incapable of learning the concept of "tree." 
But their concept may be very different than mine because we rely upon different senses and have different experiences 
of "treeness." A 2-year-old with a visual impairment may know all about rustling leaves, a piece of treeness I did not 
learn until much later in life ! 



Kurt Fisher, an American psychologist, says that we put together basic concepts into bigger and bigger "chunks." 
For example, we learn about how one object can be stood up on top of one another. Another time, we learn that if we 
push a ball, it will roll. Another time, we learn that a rolling ball can knock over things. We put all these things together 
when we set bowling pins upright on the floor and aim a bowling ball at them in order to knock them down. Sen- 
sorimotor concepts that we can use as adults ! 

Some people call these bigger chunks of basic concepts, "scripts." A script usually involves a series of actions. We 
have a script for going to the grocery store. We get our cart, walk up and down the aisles, put food in the cart, and then 

12 



pay for that food. Some of us may have parts in our scripts where we eat the free samples, some of us don' t ! We learn 
how a script for buying food at a Walmart superstore is different from buying food at a convenience store. 

We also develop more abstract and more complex concepts, as we grow older. We learn about the physical world 
in science classes. We start by dividing the world into things that move and eat and things that don't. We don't stop 
categorizing until well after we are discussing bacteria and plankton and chemical compounds. We learn about our 
own bodies and our lives; then learn about our friends' lives; and then we are discussing Arab-Jewish relations in Israel. 
We learn about in and out and on and off; and then we are booting up computers, putting in our floppies and typing 
away. But all these concepts start with what we learn in the sensorimotor period. They start with our own experiences, 
not what we have been told about another person's experiences. 

How do we help a child with visual impairments develop a solid base of concept development? The key is not to 
so much tell the child about the world around them, as it is to provide the child with experiences that allow them to 
create these concepts for themselves. For example, telling a child who has no vision about washing dishes is not as 
good as having the child right there with you. She needs to learn about dish washing as she feels the suds, experiences 
the dirty dish going into the water, notices the difference between the wash water and the rinse water, and touches the 
dishes in the dish rack. You can use words to describe what the child is experiencing, but don' t use words without the 
experience. 

Another way to help the children develop these concepts is to give them opportunities for exploration and play. The 
OT, PT, Orientation and Mobility Specialist, and Teacher for Students with Visual Impairments all need to work with 
families to help children develop motor skills they can use to explore the world. Sometimes this means that children 
need "help" to move independently. Sometimes it means that children need toys that sound interesting to encourage 
exploration or toys that feel interesting, or toys that we know the child can see and will enjoy examining. 

A child with visual impairments needs to have routines in order to learn how pieces of the world are connected. We 
need to provide an environment that is predictable. How is eating different than bathing? Each happens in a predict- 
able place, with distinct objects and actions, and at certain times during the day. 

A predictable environment is also one where I can find things easily. During the first part of the sensorimotor period, 
children without a vision loss "forget" about things they can't see. Gradually the child learns that objects do continue to 
exist, even when they are out of sight. This is a harder concept for children with visual impairments to learn. Anything 
these children can't touch or hear is gone. We can help these children learn about the permanence of objects by 
creating a situation where objects are easy to find and where objects don't get lost quite so easily. We can do this by 
attaching toys to a frame with string or by putting the baby in a play pen with her toys velcroed to the same place on the 
floor or to the slats every time. We can make sure a toddler's toys are always in the same place, and that the toddler 
has lots of landmarks to use to find those toys. We can look for toys that make sounds, so the child can hear them even 
if he can't see or touch them. (We need to remember that reaching to a sound happens later in the infant's life than 
reaching for an object he can see.) 

Children need toys that help them make comparisons. If we give a child blocks to play with, we should give her all 
types of blocks. She needs LEGOS and wooden blocks and big blocks and small blocks, so that she can compare 
and discover for herself what makes a block a block. Some important comparisons are materials (wooden spoons vs. 
metal spoons), size (big spoons vs. small spoons), shape (a plain spoon vs. a spoon with Bugs Bunny for the handle), 
number (one spoon vs. many spoons) or the objects themselves (spoons vs. forks). 

Toys and objects should respond to the child's actions. The child needs to have things that she can squeeze, rattle, 
open, close, stack, turn, pull apart, and put together. The child also needs things that get warm when she holds them, 
things that move when she pushes, and things that make sounds when she blows through them. 



3 













13 



Provide the child with real, every day objects. Pots and pans, cups, plates, forks, blankets, brooms, TV remotes, 
toilet paper, towels, and sponges. 

We need to provide experiences. We need to take the child with us to the store, post office, and dry cleaners. We 
need to explore parks and malls. We need to have the child with us while we wash dishes, make beds, prepare meals, 
put gas in the car, shine shoes, fold clothes, and plant flowers. 

Hooking new learning on to old concepts is one way to help the child learn more about her world in a meaningful 
way. It allows the child to try new things and change her ideas about the things she already knows. New things should 
not be totally new. We need to introduce new things to our children in a way that does not scare them. Some part of 
the new thing should be familiar to the child. If we are introducing a new object, is there some way the new object is 
like something the child already enjoys? Is it the same size, the same color, the same shape? Can the child try familiar 
actions such as banging or opening or rolling on the new object? Does the new object make the same noise a familiar 
object makes? 

Children need lots of time to try something over and over in order to make sense of it. Let your child play. Let your 
child direct the play. You can join in and play with your child, but do what she is doing before you try to show the child 
something new. Let the child know that she can have interests of her own, and then that you can show her new ways 
of doing things. 

Concept learning and teaching should be fun for both adult and child. It is exciting to see children discover the 
world. It is thrilling to see children having new ideas. It is a joy to be part of that discovery and learning. 



Second Language Acquisition 
and Children with Visual and Hearing Impairments 

By Maria L. Mufioz, M.A., CCC-SLP, Austin, Texas 

FIRST LANGUAGE ACQUISITION 

Babies are born with the ability to distinguish speech from other sounds they hear, even though they do not under- 
stand what it means. By the time children reach school age, they are speaking in complex sentences, having conversa- 
tions, and understanding most of what they hear. How does the development of language occur? 

Children's brains are designed to help them learn language. From the time they are born, their brains register and 
process the sounds they hear. As a child's brain, thinking skills, and motor systems develop, so does his/her under- 
standing and use of language to communicate. Underlying language development is the ability to think about the world, 
and explore it with vision, hearing, smell, touch, etc. As a child begins to make sense of the world through exploration, 
language is attached to those experiences. Language develops gradually, from single words at about 12 months to 
complex sentences at 5 years, and from simple concepts (juice, shoes) to those that are more abstract (frustrated, 
addition). School-age children continue to learn and use increasingly complex and abstract language. 

Because early language develops through sensory exploration and understanding of the world, language develop- 
ment for a child with a visual impairment or deafblindness will be effected by the nature and severity of the sensory 
impairments, and by other factors such as motor and cognitive skills. Some children with mild to moderate vision and 
hearing losses can be taught to compensate for limited visual and auditory information. They do this by using their other 
senses, thinking skills, and hands-on experiences to learn the meanings associated with words and sentences. 



14 



1 



SECOND LANGUAGE ACQUISITION 

The development of a second language can occur in different ways. For example, a child may be exposed, from 
birth, to two languages at the same time; or a high school student might take a foreign language elective. I want to talk 
specifically about children who learn a language other than English at home, then begin to learn English when they enter 
school. Depending on the parents' requests and services offered by the local district, these children may be placed in 
an English speaking classroom, an English as a Second Language (ESL) classroom, or a Bilingual Education class- 
room. It is important to note that a child's classroom placement will have an impact on the development of both first 
and second languages. Bilingual education classes foster development of skills in English and the child's first language. 
ESL classes only support skill development in English, a strategy that may be associated with slower acquisition of 
abstract language. 

In general, these children enter school with proficiency in their native languages, which they then use as natural 
foundations for learning English. The process of acquiring English is gradual and follows a pattern of development 
similar to first language acquisition. For example, simple sentences are produced before complex ones. Children 
make errors in English that reflect the linguistic rules of their first language. For example, a Spanish speaking child may Jfl 
say, "I want the ball green," because in Spanish speech, adjectives are spoken after nouns. Conversational skills are Q 
acquired (in about 2 years) before the abstract language required in a classroom is fully developed (in 5 to 7 years). Q 
These children still learn language best through exposure and experiences. 

Second language acquisition, however, often occurs during classroom activities where specific, targeted English 
skills are being taught, rather than through the hands-on experiences typical of first language acquisition. Children are 
challenged to learn English quickly, while keeping up with the new concepts introduced in their classes every day. They 
have little time to learn basic English before it must be understood and used in highly abstract and decontextualized ?s 
academic activities. 

VISUAL AND AUDITORY IMPAIRMENT AND SECOND LANGUAGE ACQUISITION 

Generally, it has been assumed that if a child's first language develops normally, the second language will also 
develop normally. Why might this assumption NOT be true for children with visual impairments or deafblindness? 

Many professionals, including myself, have observed that verbal children with visual impairments or deafblindness 
sometimes have great difficulty acquiring a second language. They also may have difficulty transitioning from bilingual 
education to English-only instruction. I think the differences between learning a first and second language come from 
the ways those two languages are acquired. As with all children, verbal children with visual impairments or 
deafblindness also learn their first language gradually, over many years. While the information they are getting from the 
environment is reduced, within the context of multiple, highly meaningful, multisensory experiences, other senses are 
used to support and compensate for limited visual and auditory information. A foundation of relatively normal language 
is built, upon which is added the complex language required in school. 

Second language instruction in a classroom is by nature primarily visual and auditory. One language is used to teach 
another language, either through use of the first language or by simplified explanations of concepts in the second 
language. Because children are expected to use and understand abstract academic concepts in English almost imme- 
diately, they often don't have time to develop complex language gradually. Children with visual impairments or 
deafblindness have difficulty compensating for the limited or distorted information received through their visual and 
auditory systems. They often cannot use touch, smell, taste, or movement to learn abstract concepts that are taught 
visually and auditorially. Therefore they must rely upon prior knowledge to understand what they are hearing and 
seeing. They can quickly and easily miss or misunderstand the concepts being taught. 



15 






Here is an example of how a student with deafblindness might have difficulty with second language acquisition: 
Juan, a Spanish-speaking student with a visual and auditory impairment, is in a class that's beginning a study of oceans. 
The teacher shows a slide of the beach. (Juan sees a light and dark blur, but doesn't recognize the picture.) The 
teacher says, "We are going to study oceans." (Juan hears "oin". Due to his hearing loss, he can't hear /s/ or /sh/. He's 
not sure what an "oin" is, and can't see the slide well enough to figure it out.) Next, the teacher shows a slide of a fish 
and says, "We are going to study saltwater fish." (Juan doesn't know what a "altwatei" is and, again, can't see the 
picture. With his limited English proficiency and hearing impairment, he doesn't realize that two different words were 
spoken.) The teacher then asks the class to write a short paragraph about oceans. (Juan looks around and sees the 
other children writing, but is confused and does not understand the topic.) 

In this example, Juan isn't learning the English vocabulary because he cannot hear it clearly. He's unable to fill in the 
auditory gaps with pictures because he cannot see them. Reduced auditory and visual input prevents Juan from 
recognizing the topic, and he doesn't realize that the class is discussing familiar things; "mar" (sea) and "pez" (fish). 
Language learned in this context is very different from learning about oceans by going to the beach, playing in the sand 
and waves, smelling the salt air, and feeling fish brush against a leg. Juan's ability to learn English is limited by the highly 
visual and auditory demands that are emphasized in his classroom setting. 

A FEW SUGGESTIONS FOR ENCOURAGING SECOND LANGUAGE LEARNING 

1. Consistently implement modifications and devices used to improve hearing and vision, such as hearing aids 
and glasses. 

2. Whenever possible, teach children through hands-on, multisensory activities that will help them learn experi- 
entialfy as well as linguistically. 

3. Use a child's native language to support understanding of the second language. 

4. Help children understand the relationships between new concepts that are being taught and their familiar 
experiences. 

5. Children may require specific training in their second language, to discriminate between speech sounds and to 
identify word boundaries. These are critical skills for the development of reading and writing. 

6. Periodically check a child's notes and ask questions to verify concept comprehension, making sure that visual 
and auditory information is interpreted accurately. 

RESOURCES 

Guinan, H. (1997). ESL for students with visual impairments. Journal of Visual Impairment and 
Blindness, 91(6), 555-563. 

Munoz, M. L. (1998). Language Assessment and Intervention with Children who have Visual 
Impairments: A guide for speech-language pathologists. Austin, TX: Texas School for the Blind and 
Visually Impaired. 

Snyder, T. (1972). Teaching English as a second language to blind people. New Outlook for the Blind, 
66(6), 161-166. 

Williams, C. B. (1991). Teaching Hispanic deaf students: Lessons from Luis. Perspectives in Education 
and Deafness, 10(2), 2-5. 



16 



Check Those Hearing Aids Every Day! 

By Gigi Newton, Teacher Trainer, TSB VI, Texas Deafblind Outreach 

As I travel around the state, visiting children with deafblindness in their homes and classrooms, I always check the 
children's hearing aids. Since these children need to make use of all of the sensory information available to them, having 
hearing aids that fit and work properly is very important. Unfortunately, many times I have found hearing aids that 
weren't working properly. In one instance I checked the hearing aids on a child when I arrived at a school mid-day. I 
discovered that for two hours he had been listening to a "hiss" because the aids were set on "T" for use with a 
telephone. His hearing aids had effectively blocked any possibility of him hearing any sound other than that hiss. The 
reason this had happened was because the teacher and the paraprofessional did not now how to check the hearing aid. 
This should not ever happen for any child with a hearing impairment, but especially not for a child with deafblindness ! 

The classroom that has a child with a hearing impairment should have a hearing aid stethoscope and battery tester 
to check the hearing aid every day, and also a supply of extra batteries. In addition, IEP modifications and strategies 
should include the assignment of a staff person who will be responsible for checking the hearing aid on a daily basis. 
Regional Day School Programs for the Deaf (RDSPD) staff can demonstrate how to check hearing aids. 

A videotape that can help, Hearing Aid Management Skills for Families of Young Children Who Are Deaf or 
Hard of Hearing (Item #206), is available through Hope, Inc. for $42.00. Parent advisors are shown explaining and 
demonstrating basic concepts and skills related to the management of the child's hearing aids, such as understanding 
the anatomy of the ear, hearing tests, the audiogram, identifying parts and function of the hearing aid, putting the aids on 
the child, giving the hearing aid a daily listening check, establishing full-time hearing aid use, and troubleshooting for the 
source of feedback. Additionally, A Resource Manual For Understanding And Interacting With Infants, Toddlers,and 
Preschool Age Children With Deaf-Blindness (pages 109- 112 "Hearing Aid Care & Daily Listening Check for Ear-Level 
Aid") also addresses hearing aid management, and is available for $75.00. Order the video or manual from: 

HOPE 

1856 North 1200 East 
North Logan, UT 84341 
Phone/Fax: (435) 752-9533 
Web site: <www.hopepubl.com> 
E-mail: hope@hopepubl.com 

You can also purchase a Hearing Aid Care Kit from HARC Mercantile, Ltd. for $33.50. This particular kit 
includes: a dehumidifier and storage case, stethoscope, forced air blower to keep earmolds dry, a mini-brush for 
cleaning the outside of the hearing aid, a wax remover tool, and a battery tester and holder. Similar kits may be 
available from other sources; check with your local audiologist or hearing aid distributer. Their contact information is: 

HARC Mercantile, Ltd., 

P.O. Box 3055, 

Kalamazoo, MI 49003-3055; 

Phone (Voice/TTY): (800) 445-9968; Fax: (800) 41 3-5248; 

Website: <www.harcmercantile.com> 



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Step One: Examine the aid for damage 

Hearing aids take a beating, especially from children. Make sure the case is not cracked or broken, that there is no 
visible sign that the aid has recently visited the toilet, or that the earmold is not plugged with earwax. If you notice major 
problems, make sure that the parents know about it right away. Classroom staff can sometimes handle problems, such 
as wax in the earmold. Other times the aid will need to be returned to the dealer. Sometimes a good audiologist, 



17 






speech pathologist, or teacher of the deaf and hearing impaired can address the problem, especially if it is just a broken 
cord or moisture in the aid or earmold. Staff members should be clear about who can address which types of problems 
and be instructed on regular maintenance. 

Step Two: Check the battery 

Battery testers can be purchased from any number of variety or hardware stores such as Walmart, Home Depot, or 
Radio Shack. Some will check any size or type of battery, and some are designed to check only the small, flat type of 
battery used in hearing aids and watches. They are fairly inexpensive; one that will do the job of checking a hearing aid 
battery can be found for as little as $7.00- $ 10.00. Different hearing aids use different size batteries, so it is important 
to make sure the tester is set to the correct setting for the size of battery your child's hearing aid uses. The size of the 
battery is written on the battery. Generally all you need to do is touch the + (positive) end of the battery to the + 
(positive) wire or point on the tester and then touch the - (negative) end of the battery to the - (negative) wire or point 
of the tester. An indicator of some type will register whether the battery is "good" or needs replacing. Batteries should 
be checked every day , even if you put a new battery in just the day before. 

Step Three: Use a stethoscope to listening to the hearing aids 

Once you have examined the aid and checked the battery, you need to listen to sound quality of the hearing aid. It 
is not enough to hear a whistle (feedback) from the hearing aid and assume it is working correctly. You need to listen 
using a device called a hearing aid stethoscope. A hearing aid stethoscope looks similar to a doctor's stethoscope 
except that it has a coupler that fits onto the earmold. When the hearing aid is turned on, you can listen to the sound quality. 

It is a good idea to listen to the hearing aid every day to detect sound problems that can occur as a result of a short 
in a cord, moisture or dirt in the aid, or other problems that impact the aid. You can also detect sounds that would 
indicate that the hearing aid is set on the telephone setting. HARC Mercantile also sells an inexpensive stethoscope 
individually for testing hearing aids. The part number is HAC-3000A. The price is $16.00 plus $5.00 shipping. 

Be sure the aid is set on "M" for microphone, that the volume is at the lowest setting, and that the aid is turned on. 
Slowly adjust the volume. Listen to the environmental sounds; then listen to your own voice. Say the vowel sounds 
such as ah, ee, oo, i and also consonant sounds such as b, t, s, sh. The sounds should be clear. This is a nice place to 
start teaching the child to check his own hearing aid. You can have him vocalize for you, while you listen; then you can 
vocalize for him after the aid goes in his ear and have him listen. This is also a nice turn-taking activity and a way to 
work on vocalizing. 

Step Four: Check for feedback 

Place the earmold in the child's ear after the aid is set on the volume recommended by the audiologisL The earmold 
should fit securely in his ear and should not whistle (this is feedback). If you do hear feedback, remove the aid and 
cover the opening of the of the canal in the earmold with your thumb. Turn up the volume. Do you hear feedback? If 
you do there is a problem with the aid itself. If not, you know the problem is the earmold is no longer fitting the child. 
New earmolds need to be made frequently (every 4-6 months) for a young child who is growing rapidly. 

CONCLUSION 

Just like glasses, hearing aids will not help a child if they are not worn. They also will not help him if they are not 
working properly. No child should ever have to suffer an additional hearing impairment because the professionals are 
not making sure the hearing aids are turned on, set properly, and working. If you are not sure how to check your child's 
(or student's) hearing aid, contact a teacher of the deaf or hearing impaired or the hearing aid dealer or audiologist who 
prescribed the aid. You wouldn't let a child use a wheelchair that is broken. Why should you let him use a hearing aid 
that isn't working? 

18 



Making It! 
Successful Transition Competencies for Youth with Visual Disabilities 

By Dr. Karen Wolffe, Career Counseling & Consultation, Austin, Texas 

wolffe@afb.net 



This article is based on a presentation given at the 1999 Texas AER conference. The presentation focused on the 
essential elements of successful programming for preparing children and youth with visual disabilities for life and adult 
responsibilities. There are numerous skills that all young people must master, in order to leave school prepared to 
contribute to their communities and participate fully in life activities. A youngster with a visual disability who masters the 
skills outlined here will be ready to meet those demands. 

TOP TEN TRANSITION COMPETENCIES 

An understanding of work based on real life experiences 

An understanding of work based on real life experiences begins with chores and expectations for performance at 
home. By participating in home-based activities (picking up toys, clothes, and materials; washing and drying dishes, 
setting the table, serving food; taking out the trash; mowing the yard; and so forth), children with visual disabilities learn 
that they are contributing members of a household. They learn that their families expect them to perform household 
tasks that benefit the entire family. 

Once children are old enough to attend community and school activities, they will benefit from being given respon- 
sibilities in those settings. For example, at a church or synagogue function, children can help set up and then put away 
furniture or materials used in services or activities, hand out printed materials to attendees, or help entertain younger 
children. Likewise, participation in scouting activities or community group meetings with set responsibilities can help 
establish the need for individual work that benefits the group. Volunteer experiences with relatives or neighbors and in 
nearby neighborhood recreation or senior centers can also help children learn the importance of helping others while 
developing strong work habits and skills. 

Following productive efforts without pay at home, school, and in the community, it is important for children with 
visual disabilities to work for pay. Ideas for paid work experiences that young people can do include entry-level jobs 
in restaurants, grocery stores, retail establishments, hospitals and nursing homes, recreation centers, lawn maintenance, 
car detailing, baby-sitting or pet sitting, and so forth. 

Well developed socialization skills 

Social skills are critical for both life satisfaction and success in the work place. This includes those skills necessary 
to develop and maintain interpersonal relationships, an understanding of reciprocity, and mastery of effective commu- 
nication skills, including the nuances of nonverbal communication. 

Most children learn socially appropriate behaviors through their observations of those around them: family mem- 
bers, neighbors, classmates, and so forth. This task is more difficult for children with visual disabilities because they 
either can't see what's happening in the environment or their observations are limited or skewed by their inability to see 
clearly. This is especially true about nonverbal cues such as winking, nodding, smiling, frowning, shrugging one's 
shoulders, and the like. Children with severe visual disabilities must be taught these nonverbal skills and positively 
reinforced to use them. 

Caring adults and older children can help in social skill development by giving youngsters without good eyesight 
verbal feedback about what works and what doesn' t work for them in everyday social interactions. They also need to 
know from those who can see well, what is going on around them — what their peers are doing when out of their 

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viewing/hearing range, what they are wearing, and with whom they are interacting. 

This verbal feedback and information sharing will help the children's understanding about social options available to 
them. Children must learn that social competence is based on an appreciation of others and that reciprocity (giving to 
and taking from others) is the hallmark of successful social relationships. By expecting children with disabilities to both 
give and take in social interactions, we set the stage for them to be integrated into the larger community more readily. 

Well developed problem solving skills 

Throughout life, individuals handle problems and problem situations routinely. Successful people learn the coping 
and strategizing mechanisms categorized as problem solving skills during childhood. The risk for young children with 
disabilities is that others will do their problem solving for them. These parents, teachers, peers, and people are well 
intentioned but unaware of the damage they do in the development of this skill area. These folks don't realize how 
these skills are learned best: by having the opportunity to figure out what to do when confronted with difficult situations 
or specific problems. 

Children with visual disabilities need to learn to identify and analyze problems. Children can identify problems by 
coming to recognize that when they feel out-of-sorts, angry, frustrated, or confused, they likely are confronted by a 
problem. The key is to define what it is that is bothersome to them. The next step in problem solving is to analyze the 
problem by answering the following questions: 

• How do I contribute to this problem? 

• How do others contribute to this problem? 

• How does the environment contribute to this problem? 

• What has kept me from resolving this problem to date? 

Children who are too young to answer these questions independently may need a caring adults to help them 
process this information in a meaningful way. The adults will want to model the process for them of addressing the four 
areas listed above as an appropriate strategy for analyzing problem situations. Once the problem has been defined, 
children can be encouraged to consider possible solutions or goals (what it would be like without the problem). 

At this juncture, adults and friends can help the person doing the problem solving generate a list of action possibili- 
ties — things to do to resolve the problem and achieve the solution. All ideas generated by the individual with the 
problem, and those helping or brainstorming solutions with the person, need to be written down. The person doing the 
problem solving can then reflect on which solution will work best. It is critical that the problem solver processes his or 
her choices to determine what to do independently. 

Unless the situation is life threatening, children should be allowed to choose a course of action and act upon it. If 
their plans prove effective and they are making good progress toward resolving a problem, they need to receive 
positive reinforcement from family, friends, and service providers. If their plans prove ineffective or are never imple- 
mented, they need to be confronted (using an empathetic approach) by those who care about them and encouraged to 
reconsider their plans. 

Application of self-advocacy skills 

Self-advocacy involves being able to describe one's disability in functional terms. It also involves being able to 
discuss any needs for accommodations or modifications in an assertive manner. Throughout their lives, people with 
disabilities are asked about their differences — sometimes in rather rude or inconsiderate ways. Even if other people 
(prospective employers, teachers, friends, and others) do not ask about their disabilities, they will be curious about 

20 



how people with such disabling conditions can work, play, study, and live normal lives. Children who are prepared to 
handle these inquiries from others, and who feel comfortable with the task, are more likely to put others at ease and 
present themselves well. 

As early as appropriate, children need to learn that their vision differs from the vision of other people, but that it 
doesn't define who they are — it's just an attribute. They need to respond to questions, but shouldn't feel obligated to 
provide all the details of their medical histories. A youngster who is unable to see due to Retinoblastoma or Retinopa- 
thy of Prematurity (ROP) doesn't need to provide information about the medical condition. He does need to be able 
to explain his or her functional limitations and may want to add some information about how he or she does things 
differently. For example, the child might say to a prospective teacher "I am unable to see to read print, but I love to 
read and I read both braille and audio books." By focusing on the functional limitation and providing insights into how 
a specific task is performed, the child helps the teacher understand that the disability is not overwhelming. 

Application of compensatory skills 

Blind and visually impaired children must learn compensatory skills. These include skills such as reading and writing 
with braille or with print using optical devices, orientation and mobility skills, technology skills, activities of daily living, 
career education content, and the like, in order to fully participate in life activities. 

Braille and print are the primary mediums for children engaged in literacy activities that involve reading and writing. 
For children without functional vision or those with severely impaired vision, braille is the medium of choice. In order 
to be competitive in adult environments, children need to learn to read at speeds commensurate with those of their fully 
sighted peers. Reading speeds of less than 50 words a minute will inhibit the ability of a person to enter the labor force 
successfully. Both children with low vision and blind children need to use this benchmark to determine if the medium 
they are using is appropriate for them to be competitive when they leave school and attempt to secure work. 

Likewise, orientation and mobility (O&M) skills are critical to successful inclusion in the larger society. Without the 
ability to drive to and from work, shopping centers, doctor's offices, and so forth, people with visual disabilities must 
rely on alternative forms of transportation. Students who learn early in their lives how to get around on foot, by bus or 
other modalities (trains, subways, taxis, paratransit, etc.), with hired drivers, family, and friends are more likely to be 
successful on their own following childhood. 

In addition to instruction in alternative literacy media and O&M, students with visual disabilities need instruction in 
technology skills — both generic computer skills and disability-specific skills, including the use of screen enlargement 
programs, speech and braille output devices, braille embossers, reading machines, talking calculators, electronic 
notetakers, and so forth. 

Finally children must learn to manage their home and personal needs through instruction in activities of daily living. 

Knowledge of career options and sources of information 

Structured instruction in career education can provide students with essential knowledge of the array of career 
options available to them. Many youngsters with visual disabilities have difficulty accessing information about the 
broad range of job choices available to them. This occurs because they cannot casually and serendipitously observe 
adults performing different jobs. 

Compounding this problem is the fact that sighted people who do share information with youngsters about jobs, 
have a tendency to "filter" information. They share information only about what they think the youngster can do without 
regard for what the youngster might want to do or be interested in learning more about. 



21 


















Without good vision it is difficult not only to determine what job choices are available in the community, it is also very 
difficult to learn about the nuances of jobs: what people wear to work, what kinds of tools they use to perform their 
jobs, where they work, and how they behave on the job. Sources of general information about jobs and the labor 
market have traditionally only been available in print This makes it even harder for young people with significant visual 
impairments to get this information. 

Students need to be taught how to use research techniques that they can apply to this problem: how to use the 
Internet, how to use recorded materials from the regional libraries for the blind and physically handicapped, and how 
to perform information interviews. There are a number of materials written in accessible formats that can be introduced 
to students such as Career Perspectives (Attmore, 1990), Jobs To Be Proud 0/(Kendrick, 1993), and the Transi- 
tion Tote (Wolffe & Johnson, 1997) that provide good information about job and career research techniques. In 
addition, resources like 0*Net and the Occupational Outlook Handbook (DOL, 2000), that are available on the 
Department of Labor website at <www.dol.gov>, are accessible on-line. 

An important resource for information is people with visual disabilities who are currently employed in jobs like those 
in which students are interested. These individuals can be accessed through the American Foundation for the Blind's 
Careers & Technology Information Bank. You can connect with them either on-line at <www.afb.org>, via telephone 
at (800) 232-5463, or by contacting local chapter members of consumer organizations such as the American Council 
of the Blind or the National Federation of the Blind. By using techniques like informational interviewing and job 
shadowing, students with visual disabilities can learn firsthand about jobs being performed that they might be interested 
in pursuing. 

An understanding of employers' concerns 

In addition to knowing about job choices, students need to gain an understanding of employers' concerns with 
regard to hiring people with visual disabilities. There are four major areas of concern voiced by many employers: 
safety, access to print, transportation, and the ability of workers with disabilities to meet quality and quantity quotas. 

Young people with disabilities need to be prepared to address these concerns. They will need to explain to 
employers how they have performed previous jobs or work-related tasks safely using adaptive techniques or modified 
equipment. They will want to explain how they access and generate printed information and be prepared to demon- 
strate any assistive technology that they use to do so. They will have to explain to prospective employers how they will 
get to and from work consistently and on time without driving. And for employers' concerns to be allayed, they will 
have to be prepared to demonstrate their ability to perform tasks well and in a timely fashion. 

Finally, students need to understand how employers' expectations change over time. That is, they may need to be 
taught that an employer initially expects to see evidence of good work habits and rudimentary work skills. He or she 
expects to teach a new hire many of the nuances of the job. New employees are typically oriented to the work site, 
introduced to their fellow workers and taught how they will be expected to perform their jobs. After the first few 
months, the employer expects to see improvement. He or she assumes that a new employee will need less and less 
help on a daily basis. Employees who have been with a firm for six months to a year are expected to be performing at 
or near peak performance. Once employees have achieved peak work performance, employers begin to look for a 
willingness to teach these learned skills to others. They also hope to see a willingness to learn new job tasks and 
assume greater responsibility, and an interest in career advancement. 

Mastery of career counseling content areas 

An introduction to career counseling content in self-awareness, vocational selection, job seeking, job maintenance, 
and job search skills can be helpful to a student. It can facilitate a student's understanding of how to make good 
decisions about employment potential, how to prepare and look for work, and how to maintain a job once secured. 



22 



Self-awareness is indicated by a thorough knowledge of values, interests, abilities, and liabilities, as well as the 
knowledge of how one appears to others and relates to others. Individuals who are self-aware demonstrate the ability 
to set goals. This includes daily detail goals, achievement goals, and personality goals; as well as the ability to plan, 
organize, and discipline themselves in order to achieve their goals. 

Vocational selection has to do with knowledge of jobs available in the job seeker's home community that appeal to 
the job seeker. This selection is based on his or her values, abilities, and interests, as well as those that meet his or her 
fiscal and personal needs. Student need to have knowledge of how a job seeker's qualifications match a job descrip- 
tion and an understanding of how a selected type of work relates to short-term and long-term goals. Finally, the 
student needs to have the ability to identify places that hire people doing a job like the one he or she has chosen and 
alternative job choices related to and hopefully leading toward career goals a job seeker has already set. 

Job seeking skills are indicated by a job seeker's ability to produce well-written applications, a resume or qualifi- 
cations brief. He needs to be able to set and keep appointments (includes arranging transportation to the interview); 
and interview successfully. 

Job maintenance skills are indicated by a job seeker's knowledge of how to keep a job, including an understanding 
of employer and co-worker expectations and how their expectations change over time. Job maintenance skills also 
include the ability to discipline oneself and the ability to distinguish between work habits and work skills. The student 
needs to be able to evaluate personal issues that may result in job maintenance problems. He or she also needs an 
understanding of job benefits and payroll deductions. 

Finally, job search skills are indicated by a job seeker's knowledge of where jobs are advertised and the ability to 
find job leads or get assistance in finding job leads. He or she should be able to identify appropriate job openings; 
demonstrate job seeking skills; and to organize job search time. Additionally students need to be able to follow up on 
job interviews, and keep a record of all job contacts. 

An understanding of levels of ability and impact with regard to placement 

It is important for students to find jobs and solicit only the amount of help truly needed by external sources. In order 
to do this, students and their teachers must understand that a person's level of ability drives the amount of assistance 
that will be required from others in a job search. The three levels of intervention: informational, instructional, and 
advocacy. 

Informational people are good readers and observers. They can be given involved verbal directions and be ex- 
pected to follow through. These individuals cope fairly well with the traditional content approach to teaching. A 
teacher can lecture or lead discussions in topical areas and informational students can apply what they have heard and 
seen. These students learn by trying out new concepts in the environment and modifying them to suit their needs. 

Instructional level people are average performers. They can read and learn through observation, but demonstration 
is helpful. They can follow directions, but prefer to be shown and told how to perform. These students respond best 
to process teaching; i.e., by doing things with the instructor. The facilitator shows students how to perform instead of 
assuming they will be able to apply what's been talked about or read outside of the classroom. Once a skill has been 
mastered, however, the student continues to refine and apply what's been learned in the community. With training and 
practice, it is anticipated that the majority of these students will live independently and work competitively. 

Advocacy level people function well below average in most areas of academics and daily living skills. These 
students require intensive instruction, frequently one-to-one. Combinations of teaching methods will be necessary to 
get concepts across to such students. Instructions may need to be spoken, signed, written, pictorial, combined, or 
conveyed through other innovative approaches. Demonstration and co-active instruction may prove effective. Pro- 

23 



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cess learning is a must. Many clients at this level will be able to live and work in the community with supports like 
attendant care, communication specialists, job coaches, supervised living arrangements, special transit. 

The overriding impact of ability with regard to placement is that students who are functioning at the informational or 
instructional level can anticipate that they will be able to ultimately find and maintain their own jobs in the future. Those 
who are functioning at the advocacy level will require external placement support. 

Evidence of participation in work experience opportunities 

In closing, it is the opportunities to gain work experience that seem to have the greatest impact on future success in 
the transition process. This includes experiences through summer work programs, weekend school-to-work pro- 
grams, internships and practical, on-the-job training experiences, and employment activities in one's home and com- 
munity. For this reason, it is critical that families and service providers provide as many work opportunities as possible 
to young people with visual disabilities. 

Teachers, counselors, and parents must constandy ask themselves if they would be willing to hire the young people 
with whom they work. If not, they must consider how to help remediate or correct the behaviors or skills that they 
perceive to be deficient. If they consider the children with whom they work to be job ready, they need to help 
determine what jobs they could be doing and move them into positions of responsibility. It is not enough to believe in 
the process. Service providers and parents must believe in the product! The way to manifest this belief in the product 
- the competent, job ready student - is to hire blind and visually impaired youngsters. Employers must have evidence 
that young people with disabilities can work and there is no better evidence than a work history ! 

REFERENCES 

Attmore, M. (1990). Career Perspectives. New York: American Foundation for the Blind. 
Kendrick, D. (1993). Jobs To Be Proud Of. New York: American Foundation for the Blind. 
United States Department of Labor (2000). Occupational Outlook Handbook. Washington, DC. 

Wolffe, K., & Johnson, D. (1997). The Transition Tote. New York: American Foundation for the Blind. 

Kate's Corner - continued from pagel 

colleagues who would like to or normally receive the newsletter. If they didn't get a newsletter this time around and 
would like to receive it in the future, please share with them a copy of the form included in this newsletter or on the 
TSB VI website. 



If you are a parent of a child with visual impairments or deafblindness, check with other parents and your child's 
professionals to see if they received this edition of the newsletter. If they didn't and would like to start or continue to 
receive it, have them call us at (5 1 2) 206-9 1 03, visit the website, or make a copy of the form included with this 
newsletter. 

You are in for a real treat this month. The Spring 2000 SEE/HEAR has many wonderful articles. I would like to 
take a minute to say thanks to the SEE/HEAR Section Editors, Jean Robinson, Gigi Newton, Ann Rash, Jenny Lace, 
and Jim Durkel, for their work this year. Also thanks to Edgenie Lindquist, our TCB Consultant, Craig Axelrod, our 
Layout Editor, Jesse Garcia, our Production Editor, and Cyral Miller, who is the best proofreader I know. Without 
their efforts and the efforts of Jim Allan, who makes the newsletter available on the web, Recording for the Blind and 
Dyslexic, which records this on audiocassette, and Ann Hill at TCB, who does our braille edition, this newsletter 
literally wouldn't happen. I appreciate you more than you know, and so do all the readers of SEE/HEAR! 



24 



Central Auditory Processing Disorders 
An Overview of Assessment and Management Practices 

By Mignon M. Schminky and Jane A. Baran 
Department of Communication Disorders 
University of Massachusetts, Amherst, Massachusetts 
Reprinted from Fall 1999 Deaf-Blind Perspectives 
Published by Teaching Research Division of Western Oregon University for DB-LINK 

Hearing is a complex process that is often taken for granted. As sounds strike the eardrum, the sounds (acoustic 
signals) begin to undergo a series of transformations through which the acoustic signals are changed into neural signals. 
These neural signals are then passed from the ear through complicated neural networks to various parts of the brain for 
additional analysis, and ultimately, recognition or comprehension. For most of us, when someone talks about hearing 
abilities, we think primarily of the processing that occurs in the ear; that is, the ability to detect the presence of sound. 
Likewise, when someone is described as having a hearing loss, we assume that this individual has lost all or part of the 
ability to detect the presence of sound. However, the ability to detect the presence of sounds is only one part of the 
processing that occurs within the auditory system. 

There are many individuals who have no trouble detecting the presence of sound, but who have other types of 
auditory difficulties (e.g., difficulties understanding conversations in noisy environments, problems following complex 
directions, difficulty learning new vocabulary words or foreign languages) that can affect their ability to develop normal 
language skills, succeed academically, or communicate effectively. Often these individuals are not recognized as having 
hearing difficulties because they do not have trouble detecting the presence of sounds or recognizing speech in ideal 
listening situations. Since they appear to "hear normally," the difficulties these individuals experience are often pre- 
sumed to be the result of an attention deficit, a behavior problem, a lack of motivation, or some other cause. If this 
occurs, the individual may receive medical and/or remedial services that do not address the underlying ' 'auditory" problem. 

Central auditory processes are the auditory system mechanisms and processes responsible for the following behav- 
ioral phenomena. 

• Sound localization and lateralization 

• Auditory discrimination 

• Temporal aspects of audition including 

- temporal resolution 

- temporal masking 

- temporal integration 

- temporal ordering 

• Auditory performance with competing acoustic signals 

• Auditory performance with degraded signals 

These mechanisms and processes apply to nonverbal as well as verbal signals and may affect many areas of 
function, including speech and language (ASHA, 1996, p. 41). 






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WHAT IS MEANT BY THE TERM "CENTRAL AUDITORY PROCESSING?" 

Katz, Stecker & Henderson (1992) described central auditory processing as "what we do with what we hear." In 
other words, it is the ability of the brain (i.e., the central nervous system) to process incoming auditory signals. The 
brain identifies sounds by analyzing their distinguishing physical characteristics frequency, intensity, and temporal fea- 
tures. These are features that we perceive as pitch, loudness, and duration. Once the brain has completed its analysis 
of the physical characteristics of the incoming sound or message, it then constructs an "image" of the signal from these 

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component parts for comparison with stored "images." If a match occurs, we can then understand what is being said 
or we can recognize sounds that have important meanings in our lives (sirens, doorbells, crying, etc.). 

This explanation is an oversimplification of the complicated and multifaceted processes that occur within the brain. 
The complexity of this processing, however, can be appreciated if one considers the definition of central auditory 
processing offered by the American Speech-Language-Hearing Association (ASHA). 

This definition acknowledges that many neurocognitive functions are involved in the processing of auditory informa- 
tion. Some are specific to the processing of acoustic signals, while others are more global in nature and not necessarily 
unique to processing of auditory information (e.g., attention, memory, language representation). However, these latter 
functions are considered components of auditory processing when they are involved in the processing of auditory information. 

WHAT IS CENTRAL AUDITORY PROCESSING DISORDER (CAPD)? 

CAPD can be defined as a deficiency in any one or more of the behavioral phenomena listed above. There is no 
one cause of CAPD. In many children, it is related to maturational delays in the development of the important auditory 
centers within the brain. Often, these children's processing abilities develop as they mature. In other children, the 
deficits are related to benign differences in the way the brain develops. These usually represent more static types of 
problems (i.e., they are more likely to persist throughout the individual's life). In other children, the CAPD can be 
attributed to frank neurological problems or disease processes. These can be caused by trauma, tumors, degenerative 
disorders, viral infections, surgical compromise, lead poisoning, lack of oxygen, auditory deprivation, and so forth. 

The prevalence of CAPD in children is estimated to be between 2 and 3% (Chermak & Musiek, 1997), with it 
being twice as prevalent in males. It often co-exists with other disabilities. These include speech and language 
disorders or delays, learning disabilities or dyslexia, attention deficit disorders with or without hyperactivity, and social 
and/or emotional problems. 

WHAT ARE SOME OF THE BEHAVIORAL MANIFESTATIONS OF CAPD? 

Below is a listing of some of the common behavioral characteristics often noted in children with CAPD. It should 
be noted that many of these behavioral characteristics are not unique to CAPD. Some may also be noted in individuals 
with other types of deficits or disorders, such as attention deficits, hearing loss, behavioral problems, and learning 
difficulties or dyslexia. Therefore, one should not necessarily assume that the presence of any one or more of these 
behaviors indicates that the child has a CAPD. However, if any of these behaviors are noted, the child should be 
considered at risk for CAPD and referred for appropriate testing. Definitive diagnosis of a central auditory disorder 
cannot be made until specialized auditory testing is completed and other etiologies have been ruled out 



Difficulty hearing in noisy situations 

Difficulty following long conversations 

Difficulty hearing conversations on the telephone 

Difficulty learning a foreign language or challenging vocabulary words 

Difficulty remembering spoken information (i.e., auditory memory deficits) 

Difficulty taking notes 

Difficulty maintaining focus on an activity if other sounds are present (i.e., child is easily distracted by other 

sounds in the environment) 

Difficulty with organizational skills 

Difficulty following multistep directions 

Difficulty in directing, sustaining, or dividing attention 

Difficulty with reading and/or spelling 

Difficulty processing nonverbal information (e.g., lack of music appreciation) 



26 






There are a number of behavioral checklists that have been developed in an effort to systematically probe for 
behaviors that may suggest a CAPD (Fisher, 1976; Kelly, 1995; Smoski, Brunt, & Tannahill, 1992; Willeford & 
Burleigh, 1985). Some of these checklists were developed for teachers, while others were designed for parents. 
These checklists can be helpful in determining whether a child should be referred to an audiologist for a central auditory 
processing assessment. 



HOW IS CAPD ASSESSED? 

CAPD is assessed through the use of special tests designed to assess the various auditory functions of the brain. 
However, before this type of testing begins, it is important that each person being tested receive a routine hearing test 
for reasons that will become obvious later. 

There are numerous auditory tests that the audiologist can use to assess central auditory function. These fall into 
two major categories: behavioral tests and electrophysiologic tests. The behavioral tests are often broken down into 
four subcategories, including monaural low-redundancy speech tests, dichotic speech tests, temporal patterning tests, 
and binaural interaction tests. It should be noted that children being assessed for CAPD will not necessarily be given 
a test from each of these categories. Rather the audiologist will select a battery of tests for each child. The selection of 
tests will depend upon a number of factors, including the age of the child, the specific auditory difficulties the child 
displays, the child's native language and cognitive status, and so forth. For the most part, children under the age of 7 
years are not candidates for this type of diagnostic testing. In addition, central auditory processing assessments may 
not be appropriate for children with significant developmental delays (i.e., cognitive deficits). 

Space limitations preclude an exhaustive discussion of each of the central tests that are available for clinical use. 
However, a brief overview of the major test categories is provided, along with an abbreviated description of a few tests 
that are considered representative of the many tests available for use in central auditory assessments. 



Electrophysiologic tests 

Electrophysiologic tests are measures of the brain's response to sounds. For these tests, electrodes are placed on 
the earlobes and head of the child for the purpose of measuring electrical potentials that arise from the central nervous 
system in response to an auditory stimulus. An auditory stimulus, often a clicking sound, is delivered to the child's ear 
and the electrical responses are recorded. Some electrophysiologic tests are used to evaluate processing lower in the 
brain (auditory brainstem response audiometry), whereas others assess functioning higher in the brain (middle latency 
responses, late auditory evoked responses, auditory cognitive or P300 responses). The results obtained on these tests 
are compared to age-appropriate norms to determine if any abnormalities exist. 

Behavioral tests 

Monaural Low-Redundancy Speech Tests: Due to the richness of the neural pathways in our auditory system and 
the redundancy of acoustic information in spoken language, a normal listener is able to recognize speech even when 
parts of the signal are missing. However, this ability is often compromised in the individual with CAPD. Monaural low- 
redundancy speech tests represent a group of tests designed to test an individual's ability to achieve auditory closure 
when information is missing. The speech stimuli used in these tests have been modified by changing one or more of the 
following characteristics of the speech signal: frequency, temporal, or intensity characteristics. 



03 



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An example of a test in this category is the Compressed Speech test (Beasley, Schwimmer, & Rintelmann, 1972). 
This is a test in which the speech signals have been altered electronically by removing portions of the original speech 
signal. The test items are presented to each ear individually and the child is asked to repeat the words that have been 
presented. A percent correct score is derived for each ear and these are compared to age-appropriate norms. 



27 







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Dichotic Speech Tests 

In these tests different speech items are presented to both ears either simultaneously or in an overlapping manner 
and the child is asked to repeat everything that is heard (divided attention) or repeat whatever is heard in one specified 
ear (directed attention). The more similar and closely acoustically aligned the test items, the more difficult the task. 

One of the more commonly used tests in this category is the Dichotic Digits test (Musiek, 1983). The child is asked 
to listen to four numbers presented to the two ears at comfortable listening levels. In each test item two numbers are 
presented to one ear and two numbers are presented to the other ear. For example, in figure one, 5 is presented to the 
right ear at the same time 1 is presented to the left ear. Then the numbers 9 and 6 are presented simultaneously to the 
right and left ears. The child is asked to repeat all numbers heard and a percent correct score is determined for each 
ear and compared to age-appropriate norms. 

Dichotic Digits 



5,9 




1,6 



(Figure 1 - For text only readers: Figure 1 shows numbers 1 , 6 entering the left ear and numbers 5, 9 entering the 
right ear.) 

Temporal Patterning Tests 

These tests are designed to test the child's ability to process nonverbal auditory signals and to recognize the order 
or pattern of presentation of these stimuli. A child can be asked to simply "hum" the patterns. In this case, the 
processing of the stimuli would occur largely in the right half of the brain. If on the other hand, the child is asked to 
describe the patterns using words; then the left side of the brain is also involved, as well as the major auditory fibers that 
connect the auditory portions of both sides of the brain. 

The Frequency Pattern Sequences test (Musiek & Pinheiro, 1987) is one of the temporal patterning tests used 
frequently with children. The test items are sequences of three tone bursts that are presented to one or both ears. In 
each of the sequences two tone bursts are of the same frequency, while the third tone is of a different frequency. There 
are just two different frequencies used in this test: one is a high- frequency sound and the other a low- frequency sound. 
The child therefore hears patterns, such as high-high-low or low -high-low, and is asked to either hum or describe the 
patterns heard. As with other central tests, the test items are presented at levels that are comfortable for the child and 
percent correct scores are obtained and compared to norms. 

Binaural Interaction Tests: Binaural interaction tests are sometimes referred to as binaural integration tests. These 
tests tap the ability of structures low in the brain (brainstem) to take incomplete information presented to the two ears 
and fuse or integrate this information in some manner. Most of the tests in this category present different parts of a 
speech signal to each ear separately. If only one part of the signal is presented, the child usually cannot recognize the 
test item. However, if the two different parts of the stimuli are presented simultaneously, with one portion going to one 
ear and the other portion to the other ear, the child with normal processing abilities has no difficulty recognizing the test 
item. This is because the two parts (which are unrecognizable if presented in isolation) are integrated into a single 
identifiable stimulus by the auditory nervous system. 



An example of a test in this category is the Rapidly Alternating Speech Perception test (Willeford, 1976). For this 
test, sentence materials are divided into brief segments which are alternated rapidly between the two ears. The 

28 



example below is a rough approximation of what happens to a sentence when it is segmented in this manner. In this 
example, the first sound in the sentence "Put a dozen apples in the sack" (represented by pu) is presented to the right 
ear, then the t sound is presented to the left ear, and so forth and so on. If the child hears only the segments presented 
to the right ear or left ear, he or she is unlikely to be able to recognize the sentence. However, if the right ear and left 
ear segments are presented in a cohesive fashion to the child, sentence recognition improves dramatically as long as this 
particular function of the brain is intact. 

Rapidly Alternating Speech Perception 

PU A ZE AP S N SA jtf^ T DO N PLE I THE CK 




(Figure 2 - For text readers only: Figure 2 shows a visual representation of the above example, with the letters PU 
A ZE AP S N SA presented to the right ear and letters T DO N PLE I THE CK presented to the left ear.) 

WHAT ARE THE EDUCATIONAL IMPLICATIONS OF CAPD? 

The list of behavioral observations provided earlier in this article highlights many of the academic and/or speech and 
language problems that might be experienced by the child with CAPD. Since speech and language skills are developed 
most efficiently through the auditory sensory modality, it is not unusual to observe speech and language problems, as 
well as academic problems (many of them language-based), in children with CAPD. If a child experiences difficulty in 
processing the brief and rapidly changing acoustics of spoken speech, he or she is likely to have problems recognizing 
the "speech sounds" of language. If problems are encountered in recognizing the sound system of language, then 
additional problems are likely to be encountered when the child is asked to begin to match "speech sounds" to their 
alphabetic representations (a skill that serves as the foundation for the development of subsequent reading and writing 
skills). This in turn can lead to comprehension problems and poor academic performance. It is worth reiterating at this 
time that not all children with CAPD will experience all of these problems. There is a wide range of variability in the 
problems experienced by children with CAPD; however, it should be recognized that the presence of a CAPD places 
the child at risk for developing many of these language and academic problems. 

WHAT MANAGEMENT STRATEGIES CAN BE USED TO REMEDIATE CAPD? 

There are several different ways to help children overcome their CAPD. The exact procedures or approaches 
used will depend upon a number of factors, including the exact nature of the CAPD, the age of the child, the co- 
existence of other disabilities and/or problems, and the availability of resources. In general, the approaches to 
remediation or management fall into three main categories: (a) enhancing the individual's auditory perceptual skills, (b) 
enhancing the individual's language and cognitive resources, and (c) improving the quality of the auditory signal. 

The following discussion presents some of the procedures that may be used with a child with CAPD. More detailed 
information is beyond the scope of this article, but may be found in the various resources listed at the end of this article. 

Many children with CAPD will benefit from auditory training procedures and phonological awareness training. 
Intervention may also involve the identification of (and training in the use of) strategies that can be used to overcome 
specific auditory, speech and language, or academic difficulties. A number of actions can be taken to improve the 
quality of the signal reaching the child. Children can be provided personal assistive-listening devices that should serve 
to enhance the teacher's voice and reduce the competition of other noises and sounds in the classroom. Acoustic 
modifications can be made to the classroom (e.g., carpeting, acoustic ceiling tiles, window treatments) which should 
help to minimize the detrimental effects of noise on the child's ability to process speech in the educational setting. 






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FinaUy, teachers and parents can assist the child in overcoming his or her auditory deficits by speaking clearly, rephras- 
ing information, providing preferential seating, using visual aids to supplement auditory information, and so forth. The 
program should be tailored to the child's individual needs, and it should represent an interdisciplinary approach. Par- 
ents, teachers, educational specialists, and other professionals, as appropriate, should be involved in the development 
and implementation of the child's management program. 

DO CHILDREN WITH CAPD HAVE HEARING LOSS? 

Children with CAPD do not have hearing loss if the term is used to refer to a loss of hearing sensitivity. Most 
children with CAPD have normal hearing sensitivity and their auditory difficulties will not be detected during routine 
hearing testing unless some of the special "sensitized" tests (see discussion above) are administered. These children, 
however, have hearing loss in the sense that they do not process auditory information in a normal fashion. They have 
auditory deficits that can be every bit as debilitating as unidentified hearing loss. If the auditory deficits are not identified 
early and managed appropriately, many of these children will experience speech and language delays, academic failure 
and/or underachie vement, loss of self-esteem, and social and emotional problems. 

CAN A CHILD HAVE BOTH A HEARING LOSS AND A CAPD? 

Children can have both a hearing loss and a CAPD. Fortunately, most children seen for central auditory testing 
have normal hearing (i.e., detection) abilities. However, children with hearing loss can also have a CAPD. In fact, the 
presence of a hearing loss may place a child at risk for CAPD. This is because the auditory pathways and centers in 
the brain develop as they are stimulated with sound. The presence of a hearing loss may limit the amount and type of 
auditory stimulation that is necessary to promote optimal development of the auditory nervous system. If this happens, 
then auditory deficits are likely to result. 



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A question frequently asked of audiologists is "whether or not a child with a hearing loss can be tested for CAPD?" 
The answer is not a simple "yes" or "no." Many children with hearing losses can be tested as long as they have some 
hearing (i.e., detection) abilities. Interpretation of the test results does become somewhat more difficult for the audiolo- 
gist who is conducting the testing if a hearing loss is present, but there are distinct patterns of test results that can 
indicate the presence of a CAPD. Moreover, there are certain tests that the audiologist can use that are not affected to 
the same degree as other tests by the presence of a hearing loss. These tests should be used whenever feasible. 
Unfortunately, there are some individuals with losses so severe that testing cannot be completed. As a general rule, 
central auditory testing cannot be done if the individual being tested has a hearing loss falling in the severe- to-profound range. 



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WHERE CAN I GO FOR ADDITIONAL INFORMATION? 

The books listed in the reference section are good sources of information. In addition, we have provided a list of 
web sites that you may find helpful. 

Selected Web Sites for Teachers and Parents 

<http ://www.kidspeech.com/tips.html> 

<http://www.ldanatl.org/factsheets/Auditory.html> 

<^ttp://www.healthtouch.com/levell/leaflets/aslha/aslha024.htm> 

<±ttp://www.ldonlme.org/ld_mdepth/process_deficit/table_deficits.html> 

<Attp://www.ldonlme.org/ld_mdepth/process_deficit/pro_deficits.html/> 

<dittp://www.Kidshealm.org/parent/healmy/central_auditory.html> 



REFERENCES 



American Speech-Language-Hearing Association (1996). Central auditory processing: Current status of 

research and implications for clinical practice. American Journal of Audiology, 5 (2), 41-54. 

30 



Beasley, D.S., Schwimmer, S., & Rintelmann, W.F. (1972). Intelligibility of time-compressed CNC 
monosyllables. Journal of Speech and Hearing Research, 15,340-350. 

Chermak, G.D.,& Musiek, F.E. (1997). Central auditory processing disorders: New perspectives. 
San Diego: Singular Publishing Group. Fisher, L. (1976). Fisher's auditory problems checklist. Bemidji, 
MN: Life Products. 

Katz, J., Stecker, N.A., & Henderson, D. (1992). Introduction to central auditory processing. In J. Katz, 
N.A. Stecker & D. Henderson (Eds.), Central auditory processing: A transdisciplinary view (pp. 3-8). 
St. Louis: Mosby Year Book, Inc. 

Masters, M.G., Stecker, N.A., & Katz, J. (1998). Central auditory processing disorders: Mostly 
management. Boston: Allyn& Bacon. 

Kelly, D.A. (1995). Central auditory processing disorders: Strategies for use with children and 
adolescents. San Antonio, TX: Communication Skill Builders. 

Musiek, F.E. (1983). Assessment of central auditory dysfunction: The dichotic digit test revisited. 
Ear and Hearing, 4, 79-83. 

Musiek F.E., & Pinheiro, M.L. ( 1987). Frequency patterns in cochlear, brainstem, and cerebral lesions. 
Audiology, 26, 79-88. 

Smoski, W.J., Brunt, M. A., & Tannahill, J.C. (1992). Listening characteristics of children with central 
auditory processing disorders. Language, Speech and Hearing Services in Schools, 23, 145-152. 

Willeford, J. A., & Burleigh, J.M. ( 1985). Handbook of central auditory processing disorders in 
children. Orlando, FL: Grune & Stratton. 

Willeford, J. (1976). Differential diagnosis of central auditory dysfunction. In L. Bradford (Ed.), 
Audiology: An audio journal for continuing education (Vol. 2). New York: Grune & Stratton. 

Address correspondence to: Jane A. Baran, Ph.D., Professor, Department of Communication Disorders, Univer- 
sity of Massachusetts, 127 Arnold House, Amherst, MA 01003-0410. Telephone: (413)545-0565; Fax: (413) 
545-0803; baran@comdis.umass.edu. 






Texas Children's Health Insurance Program (CHIP) 

The federal government has made money available to states to pay for health coverage for uninsured children. This 
bill allows Texas to access that money by creating the Children's Health Insurance Program (CHIP), a health plan for 
certain low-income children. The program uses federal and state money to insure children whose families earn too 
much to qualify for Medicaid, but can't afford private health insurance. CHIP will provide insurance for children aged 
0-19 who live in families whose income is less than 200% of federal poverty level ($32,900 for a family of four). This 
will close a large gap that exists between the eligibility levels for Medicaid and the accessibility to affordable private 
insurance. Children of legal immigrants are also eligible for coverage. Call toll-free (800) 647-6558 for an application 
or more information. Applications can also be downloaded at <www.texcarepartnership.com> as well. 

Champus Expands Benefits 

Champus Tricare, the health insurance program for military dependents, will now cover the cost of FM amplifica- 
tion systems. This is a change in previous policy and is good news for those families in the military who have children 
with auditory impairments who would benefit from these systems. For more information, you may go to 
<^vww.asha.org/governmental_affairs/champus.htm>. 



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The Importance of Reality-Based Services 

By Terry Murphy, Executive Director, Texas Commission for the Blind 

In an e-mail message floating around recently was a list of things high school and college graduates "should have 
learned in school but didn't." Although the message I received attributes the sayings to Bill Gates, the more likely 
source of the original list is probably Charles Sykes, the author of "Dumbing Down our Kids." I haven't read the book, 
but it's said to talk about how feel-good, politically-correct teachings have created a full generation of kids with no 
concept of reality and how this concept sets them up for failure in the real world. 

Regardless of who wrote them, two items from the list are similar to what I've said to my son and daughter over the 
years. Item 4 says, in part, "If you think your teacher is tough, wait till you get a boss...." Item 8 says, "Your school 
may have done away with winners and losers, but life has not. In some schools, they have abolished failing grades; 
they'll give you as many times as you want to get the right answer. This doesn't bear the slightest resemblance to 
ANYTHING in real life." 

More than a few people would say these messages are too cynical or discouraging for kids, especially kids with 
disabilities. I think they are good, tough-love pieces of advice for every young person who has the potential of being 
in the job market some day. It's true — in real life, employers don't provide unlimited opportunities for you to get the 
job done, and 60 may not be a passing grade. 

About the same time I received the e-mail, an interesting article hit the newspaper in which Erica Goode of The 
New York Times reported on a Cornell University research project conducted by a Professor David Dunning and a 
graduate student. The research found that most incompetent people do not know that they are incompetent, adding 
that people who do things badly are usually supremely confident of their abilities — more confident, in fact, than people 
who do things well. One of the reasons, Dunning says, is that honest feedback is generally absent. Social norms 
prevent most people from blurting out "you stink!" - truthful though this assessment may be. 

The Texas Commission for the Blind comes into contact with people from all ages, all walks of life, for whom 
blindness is a fact. Our important job is to weave a good dose of reality into the fabric of our services lest we become 
guilty of encouraging false confidence and incompetence. It's equally important, however, to be positive. This dual respon- 
sibility often requires our staff to walk a verbal tightrope as they strive to be tough, yet optimistic, and honest, yet encouraging. 

Tough means saying to a teenager and his parents that blindness is not a characteristic that all potential employers 
understand, so he may have to work harder than a sighted person to sell himself. Optimistic means saying to them that 
we know two people with similar goals who six months ago went to work making a good living and one has already 
earned a raise. We know it can be done. 



> 

03 

z 



Honest means telling someone who has been blind all her life that a promotion is probably escaping her not because 
she is blind but because she steadfastly refuses to learn the additional skills it takes to adjust to today's faster-paced 
work environment. Encouraging means telling her at the same time that thousands of people who are blind have 
learned braille or computer skills to boost their potential for better positions. We know it can be done. 

Being tough and honest isn't always easy. It sometimes places you at risk of being called insensitive. A parent 
wrote a while back to complain that his daughter's college counselor was insensitive because the counselor had said to 
his daughter that she needed to be in class — rain or shine. The parent was astounded that anyone would expect his 
blind daughter to walk to class in the rain. The counselor's tough-love approach had been to say, "Walking in the rain 
isn't my idea of fun either, but you can't pass this course if you are not in class. Let's see if there is an alternative route 
that would give you more cover to your classroom, and you might want to buy a bigger umbrella." I'm happy to say 

32 



that the loving parent and student did eventually embrace the reality that a future employer will also expect her to come 
to work — rain or shine. The last I heard she had really blossomed into an independent traveler (with an umbrella in her 
backpack). 

Some of the most independently functioning people I've known in my years with the Commission have shared with 
me that part of their independence grew from parents who were not reluctant to lovingly expect as much from them as 
their sighted siblings. One friend said that when he gave in to the temptation to use his blindness to get out of household 
chores or school, his parents never once flinched or gave in, and he soon got the message. He said that the confidence 
they had in him resulted in his having confidence in himself as he conquered task by task alongside his brothers, who as 
typical siblings weren't exactly disinclined "to tell him it like it is." 

In our business, we see the gamut of skills coming through our doors in both consumers and employees who are 
blind. One of the most frustrating aspects of our job is to work with an untrained, incompetent traveler and get excited 
about the added potential better skills would provide, only to be met with the brick wall of "I get around just fine." 
Equally frustrating is seeing the untapped potential of a person who refuses to see the value that braille can add to their 
productivity. "I never have to take the notes in meetings — why should I learn braille?" What do you say to people like 
this? Yes, you're doing great? No. Avoiding reality may rob this person of his or her highest potential, so you dig deep 
into your bag of communication skills and find a way to be tough and honest, yet optimistic and encouraging. 

All this is no easy task, but we have found that patience, understanding, and a healthy dose of reality go a long way 
toward replacing false confidence with competence. For those of you who may be interested in the rest of the e-mail, 
here's the whole list of recommendations. 



Messages on Life 

Rule 1 Life is not fair; get used to it. 

Rule 2 The world won't care about your self-esteem. The world will expect you to accomplish something 
before you feel good about yourself. 

Rule 3 You will not make 40 thousand dollars a year right out of high school. You won't be a vice president 
with a car phone, until you earn both. 

Rule 4 If you think your teacher is tough, wait till you get a boss. He doesn't have tenure. 

Rule 5 Flipping burgers is not beneath your dignity. Your grandparents had a different word for burger flipping; 
they called it opportunity. 

Rule 6 If you mess up, it's not your parents' fault, so don't whine about your mistakes, learn from them. 

Rule 7 Before you were born, your parents weren't as boring as they are now. They got that way from paying 
your bills, cleaning your clothes and listening to you talk about how cool you are. So before you save the 
rain forest from the parasites of your parents' generation, try "delousing" the closet in your own room. 

Rule 8 Your school may have done away with winners and losers, but life has not. In some schools they have 
abolished failing grades; they'll give you as many times as you want to get the right answer. This, of 
course, doesn't bear the slightest resemblance to ANYTHING in real life. 

Rule 9 Life is not divided into semesters. You don' t get summers off and very few employers are interested in 
helping you find yourself. Do that on your own time. 

Rule 10 Television is not real life. In real life people actually have to leave the coffee shop and go to jobs. 

Rule 11 Be nice to nerds. Chances are you' 11 end up working for one. 

33 



z 

<! 

B 



The Importance of Reality-Based Services 

By Terry Murphy, Executive Director, Texas Commission for the Blind 

In an e-mail message floating around recently was a list of things high school and college graduates "should have 
learned in school but didn't." Although the message I received attributes the sayings to Bill Gates, the more likely 
source of the original list is probably Charles Sykes, the author of "Dumbing Down our Kids." I haven't read the book, 
but it's said to talk about how feel-good, politically-correct teachings have created a full generation of kids with no 
concept of reality and how this concept sets them up for failure in the real world. 

Regardless of who wrote them, two items from the list are similar to what I've said to my son and daughter over the 
years. Item 4 says, in part, "If you think your teacher is tough, wait till you get a boss...." Item 8 says, "Your school 
may have done away with winners and losers, but life has not. In some schools, they have abolished failing grades; 
they'll give you as many times as you want to get the right answer. This doesn't bear the slightest resemblance to 
ANYTHING in real life." 

More than a few people would say these messages are too cynical or discouraging for kids, especially kids with 
disabilities. I think they are good, tough-love pieces of advice for every young person who has the potential of being 
in the job market some day. It's true — in real life, employers don't provide unlimited opportunities for you to get the 
job done, and 60 may not be a passing grade. 

About the same time I received the e-mail, an interesting article hit the newspaper in which Erica Goode of The 
New York Times reported on a Cornell University research project conducted by a Professor David Dunning and a 
graduate student. The research found that most incompetent people do not know that they are incompetent, adding 
that people who do things badly are usually supremely confident of their abilities — more confident, in fact, than people 
who do things well. One of the reasons, Dunning says, is that honest feedback is generally absent. Social norms 
prevent most people from blurting out "you stink!" - truthful though this assessment may be. 

The Texas Commission for the Blind comes into contact with people from all ages, all walks of life, for whom 
blindness is a fact. Our important job is to weave a good dose of reality into the fabric of our services lest we become 
guilty of encouraging false confidence and incompetence. It's equally important, however, to be positive. This dual respon- 
sibility often requires our staff to walk a verbal tightrope as they strive to be tough, yet optimistic, and honest, yet encouraging. 

Tough means saying to a teenager and his parents that blindness is not a characteristic that all potential employers 
understand, so he may have to work harder than a sighted person to sell himself. Optimistic means saying to them that 
we know two people with similar goals who six months ago went to work making a good living and one has already 
earned a raise. We know it can be done. 



> 

03 

u 



Honest means telling someone who has been blind all her life that a promotion is probably escaping her not because 
she is blind but because she steadfastly refuses to learn the additional skills it takes to adjust to today's faster-paced 
work environment. Encouraging means telling her at the same time that thousands of people who are blind have 
learned braille or computer skills to boost their potential for better positions. We know it can be done. 

Being tough and honest isn't always easy. It sometimes places you at risk of being called insensitive. A parent 
wrote a while back to complain that his daughter's college counselor was insensitive because the counselor had said to 
his daughter that she needed to be in class — rain or shine. The parent was astounded that anyone would expect his 
blind daughter to walk to class in the rain. The counselor's tough-love approach had been to say, "Walking in the rain 
isn't my idea of fun either, but you can't pass this course if you are not in class. Let's see if there is an alternative route 
that would give you more cover to your classroom, and you might want to buy a bigger umbrella." I'm happy to say 

32 



that the loving parent and student did eventually embrace the reality that a future employer will also expect her to come 
to work — rain or shine. The last I heard she had really blossomed into an independent traveler (with an umbrella in her 
backpack). 

Some of the most independently functioning people I've known in my years with the Commission have shared with 
me that part of their independence grew from parents who were not reluctant to lovingly expect as much from them as 
their sighted siblings. One friend said that when he gave in to the temptation to use his blindness to get out of household 
chores or school, his parents never once flinched or gave in, and he soon got the message. He said that the confidence 
they had in him resulted in his having confidence in himself as he conquered task by task alongside his brothers, who as 
typical siblings weren't exactly disinclined "to tell him it like it is." 

In our business, we see the gamut of skills coming through our doors in both consumers and employees who are 
blind. One of the most frustrating aspects of our job is to work with an untrained, incompetent traveler and get excited 
about the added potential better skills would provide, only to be met with the brick wall of "I get around just fine." 
Equally frustrating is seeing the untapped potential of a person who refuses to see the value that braille can add to their 
productivity. "I never have to take the notes in meetings — why should I learn braille?" What do you say to people like 
this? Yes, you're doing great? No. Avoiding reality may rob this person of his or her highest potential, so you dig deep 
into your bag of communication skills and find a way to be tough and honest, yet optimistic and encouraging. 

All this is no easy task, but we have found that patience, understanding, and a healthy dose of reality go a long way 
toward replacing false confidence with competence. For those of you who may be interested in the rest of the e-mail, 
here's the whole list of recommendations. 



Messages on Life 

Rule 1 Life is not fair; get used to it. 

Rule 2 The world won't care about your self-esteem. The world will expect you to accomplish something 
before you feel good about yourself. 

Rule 3 You will not make 40 thousand dollars a year right out of high school. You won't be a vice president 
with a car phone, until you earn both. 

Rule 4 If you think your teacher is tough, wait till you get a boss. He doesn't have tenure. 

Rule 5 Ripping burgers is not beneath your dignity. Your grandparents had a different word for burger flipping; 
they called it opportunity. 

Rule 6 If you mess up, it's not your parents' fault, so don't whine about your mistakes, learn from them. 

Rule 7 Before you were born, your parents weren't as boring as they are now. They got that way from paying 
your bills, cleaning your clothes and listening to you talk about how cool you are. So before you save the 
rain forest from the parasites of your parents' generation, try "delousing" the closet in your own room. 

Rule 8 Your school may have done away with winners and losers, but life has not. In some schools they have 
abolished failing grades; they'll give you as many times as you want to get the right answer. This, of 
course, doesn't bear the slightest resemblance to ANYTHING in real life. 

Rule 9 Life is not divided into semesters. You don't get summers off and very few employers are interested in 
helping you find yourself. Do that on your own time. 

Rule 10 Television is not real life. In real life people actually have to leave the coffee shop and go to jobs. 

Rule 11 Be nice to nerds. Chances are you' 11 end up working for one. 

33 






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Short Classes at TSB VI Expanding 

By Dr. Lauren Newton, Principal of Special Programs, TSB VI 

1999-2000 SHORT CLASSES 

During spring semester 2000, the Texas School for the Blind and Visually Impaired (TSB VI) offered its first aca- 
demic-level short classes: Independent Living Skills (Algebra Doesn't Cook Hamburgers), which lasted for three 3- 
day weekends, and a one- week intensive Technology Program. Both classes were full, and staff and students alike felt 
that the programs were tremendously valuable. Also, we learned lessons about how to expand and improve the 
programs in the future. There are still many components of these programs that we want to develop as we go along. 

While TSB VI summer school is primarily designed for enrichment and vocational programming, we will be offering 
one instructional short class during June: Adaptive Tools & Technology For Accessible Mathematics. This class is 
designed for secondary students who will be enrolled for credit in Algebra I or a more advanced SBOE mathematics 
course during the coming school year. 

SOMETHING NEW ON THE HORIZON! 

During the 2000-200 1 school year, TSB VI will continue to offer the multiple-weekend ILS (Independent Living 
Skills) classes, and we will expand to two technology weeks. 

In addition, TSB VI short programs will add a new model of service delivery: one week of intensive instruction that 
is individually tailored to the needs of each participating student. School districts, parents, and students can select 
content from the expanded core curriculum to be taught during this week of intensive training. For example, one 
student might choose to work on technology and braille, while another student might select cooking skills and Nemeth 
Code. TSB VI Outreach Staff will join on-campus teachers to provide instruction. Study hall will be provided during 
the day and evening for TSB VI staff to help students keep up with their local assignments while they are participating 
in this special program. The students will continue to be considered enrolled and in attendance in their local school 
district during the week they are at TSB VI. 

The 2000-200 1 TSB VI school calendar is being finalized as this issue of SEE/HEAR goes to press. Look for the 
dates for all short classes on our website, or call or write Dr. Lauren Newton, Principal of Special Programs, at (5 1 2) 
206-9 1 19, e-mail: Newton_L@tsb 1 .tsbvi.edu. Interested parents should talk with their local VI teachers to assist 
them in making a referral to a short class program. 



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Helen Keller National Center National Registry 

By Nancy O'Donnell, Coordinator of the National Registry 

Have you ever wondered how many deaf-blind people there are in the United States? For many years, there has 
been no way to answer this question for the "over 21" population other than educated guesses. Estimates have varied 
greatly. For example, in 1996, only 437 individuals were reported to be deaf-blind to the Rehabilitation Services 
Administration. On the other end of the spectrum, Schein & Delk determined that 356 people per 100,000 experience 
a combination of vision and hearing loss. In an effort to gain a more accurate count and an understanding of the needs 
of this population, the federal government recently authorized HKNC to maintain a national registry of those who are 
deaf-blind. We are very excited about this project! 

34 



GETTING STARTED 

Over the years, HKNC has collected information on the clients we have served through our programs at headquar- 
ters, in the field, through our affiliated agencies and from other agencies or interested individuals. This information, 
however, has not been available on a national basis. During the summer of 1 999, we enthusiastically began the process 
of compiling this information into a national database. Beginning with records stored in our archives, we entered data 
on thousands of individuals. These records include the cause of their deaf-blindness, severity of hearing and vision 
losses, methods of communication, residential situations, employment status and training needs. We are currently 
working with a programmer to combine this information into one workable database. 

When this database is operational, we will have a better understanding of the numbers of people with various 
syndromes that cause deaf-blindness, such as Usher, CHARGE and congenital rubella. We will be able to determine 
the most commonly reported methods of communication, the numbers of people using hearing aids or who have had 
cochlear implants, services that are available and services that are needed. All of this information will be accessible in 
national, state, and local profiles. 

This type of demographic information is critical to agencies planning adult services for this population, to university 
programs preparing teachers and interpreters to work with those who are deaf-blind, to agencies providing residential 
and employment services, and to federal and state governments as they develop initiatives and priorities for funding. 

The registry will not replace the current comprehensive system of collecting census information for children aged 
birth to 2 1 , compiled by Teaching Research in cooperation with the State and Multi-State Deaf-Blind Projects. How- 
ever, we will include anyone who is deaf-blind, of any age, on our registry. If you would like to register yourself or 
obtain an application for someone you know, you can request a copy of the registry form from Nancy O'Donnell at 1 1 1 
Middle Neck Road, Sands Point, NY 11050. Copies of the form are also available at our website: 
<www.helenkeller.org/national> under Special Projects - Registry. 



National Organization on Disability Announces Over 550 Congregations 
from 50 States Have Committed to Welcoming People with Disabilities 

WASHINGTON, DC - The Religion and Disability Program of the National Organization on Disability (N.O.D.) 
announced today that over 550 congregations have signed on to the 2,000 by the Year 2000 - Accessible Congrega- 
tions Campaign. The interfaith campaign, which challenges America's congregations to welcome people with all types 
of disabilities as full and active participants, has received pledges from congregations in all 50 states. The campaign's 
theme is Access: It Begins in the Heart. 

The goal of the 2,000 by the Year 2000 - Accessible Congregations Campaign is to increase the religious partici- 
pation of children and adults with disabilities. By joining the campaign, a congregation acknowledges that it has 
barriers, both physical and attitudinal, to the full participation of people with disabilities, and commits to begin the 
process of removing them. 

"We are well on the way to reaching our goal of 2,000 by the year 2000," said Ginny Thornburgh, Director of 
N.O.D.'s Religion and Disability Program. She added, "Ours is the only national disability program addressing inter- 
faith issues. True religious access is about opening hearts, minds and doors to millions of Americans with disabilities 
who seek a full life of faith." 



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To join the campaign, an Accessible Congregation must commit to the following three principles: 

• In our congregation, people with disabilities are valued as individuals, having been created in the image of 
God; 

• Our congregation is endeavoring to remove barriers of architecture, communications and attitudes that 
exclude people with disabilities from full and active participation; and 

• People, with and without disabilities, are encouraged to practice their faith and use their gifts in worship, 
service, study and leadership. 

N.O.D.'s Religion and Disability Program, an interfaith effort, was established in 1989 to urge local congregations, 
national denominational groups and seminaries to identify and remove the obstacles to worship that alienate people 
with disabilities. Resources available from the program include training conferences and publications such as the 
popular handbook That All May Worship, a step-by-step guide designed to help congregations to remove existing 
barriers. Ginny Thornburgh, co-author of That All May Worship, has directed the Religion and Disability Program at 
N.O.D. for the past ten years. 

The National Organization on Disability promotes the acceptance and full participation in all aspects of life of 
America's 54 million men, women and children with physical, sensory or mental disabilities. Founded in 1982, N.O.D. 
is the only national disability network organization concerned with all disabilities, all age groups and all disability issues. 

For more information about 2,000 by the year 2000 - Accessible Congregations Campaign, please contact 
N.O.D. by phone: (202) 293-5960, TDD: (202) 293-5968, ore-mail: religion@nod.org. The committed congre- 
gations are listed by state on the Web at <www.nod.org>. 

Bits and Pieces 



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• Do you have used hearing aids or eyeglasses? Usually, any place that sells glasses will accept old glasses (frames 
and lenses intact) and recycle them to people in need. Hearing aids may be sent to Starkey Hearing Foundation/Fund, 
4248 Park Glen Road, Minneapolis, MN 554 16, to be given to people who need hearing aids but can't afford them. 
Hearing aids may also be sent to Oye Amigo, Inc, Janet Kruegger, PO Box 5 1 33, Austin, TX 78763. These hearing 
aids get recycled in Mexico and Central America. 

• The Disability Policy Consortium (DPC) is an independent group of statewide advocacy organizations working 
for progressive public policy on behalf of Texans with disabilities. They have a new website, <www.dpctexas.org>. 
Included on the website are sections for DPC's legislative platform, summaries of proposed legislation and appropria- 
tions issues. In addition, in the top right-hand corner of the website homepage you can gain access to the "Action 
Alert" page. This will be used to give timely information regarding issues the DPC feels require immediate action. This 
will be an important site as we enter a new legislative year. 

• Kids as Self- Advocates (KAS A) is a club for teens that want to be heard on issues relating to disabilities. KAS A 
is made up of teens and young adults with special healthcare needs, as well as their friends and siblings, speaking on 
their own behalf. Membership is free. For more information, contact Julie Keys, KAS A/Family Voices, 900 N. 
Franklin, Suite 2 10, Chicago, IL 606 10; (312) 642-2745. KAS A has a web page that is part of the Family Voices 
website, <http://www. ichp.edu/mchb/fv/kasa.html>. 

• Specialized Telecommunications Devices Assistance Program, authorized during the 1999 Texas Legislature, 
requires the Texas Commission for the Deaf and Hard of Hearing (TCDHH) to provide assistance to persons with 
disabilities to acquire a telecommunications access device or service suitable to meet their basic needs. TCDHH will 

36 



receive applications, determine eligibility, and issue vouchers for the device or services to eligible individuals. For more 
information, contact TCDHH at (5 1 2) 407-3250 (voice), or (5 1 2) 407-325 1 (TTY). 

•Web-Braille, a new service of the National Library Service (NLS) is ready for use. Grade 2 braille books are 
available to be downloaded or for online use by eligible individuals, libraries, and schools with braille embossers, 
refreshable braille displays, and other braille-aware devices. To retrieve Web-Braille files, you can use whatever 
braille equipment and browser you find most comfortable. Web-Braille contains 2,672 books and is growing. To get 
a user ID for Web-Braille, contact the library that handles your braille magazine subscriptions. (In Texas, that is the 
Texas State Library, which can be contacted at (800) 252-9605.) You will be asked to select a password and provide 
an e-mail address. Questions? Contact Judy Dixon atjdix@loc.gov, or (202) 707-0722. 

• A new law gives non-English speaking parents of students with disabilities the right to have important information 
in their native language. From the amended Texas Education Code: "If the child's parent is unable to speak English, 
the (school) district shall: 

1. Provide the parent with a written or audiotaped copy of the child's IEP translated into Spanish if Spanish is 
the parent's native language; or 

2. If the parent's native language is a language other than Spanish, make a good faith effort to provide the 
parent with a written or audiotaped copy of the child's individualized education program translated into the 
parent's native language." 



• Parents may be interested in What a Good IDEA! The Manual for Parents and Students about Special 
Education Services in Texas. The manual was updated to include the final regulations from the 1997 reauthorization 
of Individuals with Disabilities Education Act (IDEA). To order a copy, contact either The ARC of Texas at (800) 
252-9729, or Advocacy, Inc. at (800) 252-9 108. Copies cost $ 10 and are available in Spanish as well as English. 
English audiotaped copies are also available. Copies are available free of cost from Texas Commission for the Blind by 
contacting your child's B VICP Caseworker. 

• Go to <http://www.freedomforum.org/newsstand/reports/telability/printdir.asp> if you want to download the 
1999-2000 edition of America 's Telability Media. This 320-page book describes resources concerning access to 
mass media for persons with disabilities. 

• <http://www.worksupport.com> is your gateway to information, resources, and services regarding the employ- 
ment of people with disabilities. This site features updates in the following areas: accommodations, bridge to employ- 
ment, disability management, law and policy, supported employment, workforce diversity, and workforce training. 

• The Deaf-Blind Theatre Access project has a manual for making theatre accessible to the deafblind. The 
purpose of this manual is described as follows: 'Too often, entertainment is out of reach for people who are deaf and 
blind (deafblind). The challenges of communication and mobility can keep deafblind people at home, isolated. Yet, 
with specially trained interpreters, close-up seating, and an opportunity to experience sets, costumes, and props 
through touch, deafblind people can experience the magic of theatre." Go to <http://www.dac.neu.edu/nuiep/tap/ > to 
view the manual, or call the Interpreter Education Project for New England at Northeastern University at (6 1 7) 373- 
2463 (voice), or (617) 373-4302 (TTY). 

• A new book from PRO-ED is entitled, Finding Wheels: A Curriculum for Non-drivers with Visual Impair- 
ments for Gaining Control of Transportation Needs. The authors, Anne Corn and Penny Rosenblum, were in- 
spired to write this book based on the memories of being visually impaired teens who were not learning to drive at the 
time their peers were. They have written a book that helps teach strategies to a person with visual impairments to be 
a successful non-driver and maximize independence. The book costs $34.00, and may be ordered from PRO-ED at 
(5 12) 45 1-3246, or online at <www.proedinc.com>. yj 



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CLASSIFIED 



Mail or e-mail your new classifieds to Jim Durkel at: 

TSBVI Outreach, 1 100 West 45th St., Austin, TX 78756, or durkelj@tsbl.tsbvi.edu. 

An up-to-date Statewide Staff Development Calendar is posted on TSB VI's website at <www.tsbvi.edu>. 



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Texas Focus 

June 14 - 16, 2000 

Airport Hilton Hotel 
El Paso, Texas 

This conference is open to teachers, families, 

administrators, and others interested in the education 

of students with visual impairments, including those 

with deafblindness and other multiple disabilities. 

Speakers will include Deborah Chen, Linda Mamer, 
Walter Ducret, and Dona Sauerburger 

For further information, contact 
Jim Durkel at TSBVI Outreach 

Phone: (512)206-9270 
E-mail: durkel_j@tsbl.tsbvi.edu 



Summer Technology Institute 

July 25 - 27, 2000 

Austin, Texas 

This hands-on training will help teachers, 

paraprofessionals, and family members learn 

how to use a Braille N Speak and JAWS, 

access the Internet, modify augmentative 

communication devices for the visual impaired, 

produce braille, and much, much more. 

Contact: Jim Durkel, TSBVI Outreach 

Phone: (512)206-9270 

E-mail: durkel J @ tsb 1 .tsbvi.edu 



12th Annual 
Texas Fiesta Educativa Conference 



a 



Uniting Families, Schools 
and Communities" 

August 25 - 26, 2000 

St Anthony Wyndham Grand Heritage Hotel 
300 East Travis, San Antonio, Texas 

This two-day conference offers comprehensive 

topics applicable to Spanish speaking and 
Hispanic persons with disabilities, their families 
and those who serve them. Friday workshops 

are geared for professionals and will be 

conducted mostly in English. Saturday sessions 

are geared toward Spanish speaking parents and 

professionals, and will be conducted mostly in 

Spanish. Interpreters will be available for both days. 

A special pre-conference held on 

August 24, 2000 

will address: 

"Disproportionate Representation 

of Language Minority Students 

in Special Education" 

For information, contact Yvette Hinojosa, 

Director of Project P.O.D.E.R. 

at (210) 222-2637 



AER International Conference 

"AERodynamics" 

July 15 - 19, 2000 
Denver, Colorado 

For further information, 
contact AER at (703) 823-9690 



38 



Third Annual 

American Stickler Syndrome Conference 

June 11 - 13, 2000 

Denver Marriott Tech Center 

Denver, Colorado 

This conference includes information from medical 
professionals and others, for families and individuals 
involved with people who have Stickler Syndrome. 

Contact: Stickler Involved People 

15 Angelina 

Augusta, KS 67010 

Phone: (316)775-2993 

E-mail: houch@southwind.net 



Early Connections: 

Developing Partnerships in Services to Young 

Children with Visual Impairments 

June 4 - 8, 2000 

University of British Columbia 

Conference Center, 

Vancouver, BC, Canada 

For families and professionals who work with 
children ages birth - 8, with visual impairments, 
including deafblindness and multiple disabilities. 

For information call: 1 (604)822-1050, 

or visit the website at 

<http://www.conferences.ubc.ca/ 

conferences/events/earlyconnections/reg.htm> 



4th International 

Moebius Syndrome Conference 

July 21 -24, 2000 

Sturbridge Host Hotel and Conference Center 

Sturbridge, Massachusetts 

For information call (508) 347-7393 



American Association of the Deaf-Blind 

Convention 

July 27 - August 1, 2000 

Columbus, Ohio 

Contact: Joy Larson (301) 588-6545 



National Organization on Albinism and 

Hypopigmentation (NOAH) 8th National 

Conference 

July 13-16, 2000 

Burlington, Massachusetts 

Contact: (800)473-2310 

<www.albinism.org> 



Two Dirty Words: Planning and Organization 

Skills for Studens with Visual Impairments 

August 28, 2000 

Region X ESC, Richardson, Texas 

Presenters: Karen and Jay Stiteley 
Contact: Kitra Hill Gray (972)348-1580 



Position Available: 
Teacher in Special Programs, 
Texas School for the Blind & Visually Impaired 

Responsibilities: Participates with other staff in the 
TSBVI Special Programs Department, other depart- 
ments across campus, and local school districts, to de- 
velop programs for, and provide instruction to, students 
across Texas, through an on-campus, short-term 
model. Programs include short classes provided during 
the school year, and during summer school. 

Qualifications: Has, or is eligible to receive, Texas 
teacher certification with an endorsement in Visual Im- 
pairment; at least two years experience working as a 
teacher of students with visual impairments; strong abil- 
ity to work well with other professionals and with par- 
ents; good planning and organizational skills; experi- 
ence serving visually impaired students in the public 
schools in an itinerant model is preferred; experience 
working with students who have academic abilities at 
various grade levels, and providing instruction in a range 
of disability-specific curricular areas is also preferred. 

This position will begin August 2000 

For more information, contact: 

Dr. Lauren Newton, Principal of Special Programs 

Phone: (512)206-9119 

E-mail: Newton L@tsbl.tsbvi.edu 



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SEE/HEAR 

published quarterly: February, May, August, and November 

Contributions to the newsletter are always welcome. 
Articles can be mailed or e-mailed to section editors at: 

TSBVI Outreach 
1100 West 45th St. 
Austin, TX 78756 

FAMILY - Jean Robinson (512) 206-9418; robinsonJ@tsbl.tsbvi.edu 

PROGRAMMING - Ann Rash (512) 206-9269; rash_a@tsbl.tsbvi.edu 

andGigi Newton (512) 206-9272; newton_g@tsbl.tsbvi.edu 

SYNDROMES/CONDITIONS - Kate Moss (512) 206-9224; moss_k@tsbl.tsbvi.edu 

NEWS & VIEWS -Jim Durkel (512) 206-9270; durkelj@tsbl.tsbvi.edu 

Deadlines for articles are: 

December 1st for the Winter edition 

March 1st for the Spring edition 

June 1st for the Summer edition 

September 1st for the Fall edition 

Editor-in-Chief - Kate Moss (512) 206-9224; moss_k@tsbl.tsbvi.edu 

Layout Editor - Craig Axelrod (512) 206-9435; axelrod_c@tsbl.tsbvi.edu 

Production Editor - Jesse J. Garcia (512) 206-9314; garciaj@tsbl.tsbvi.edu 

TCB Editor - Edgenie Lindquist (5 12) 377-0578; edgeniel@tcb.state.tx.us 

The audio version of SEE/HEAR is provided by 
Recording for the Blind and Dyslexic, Austin, TX. 

AR is available in Spanish and English on TSBVI's website at <www.tsbvi.edu>. 

if you no longer wish to receive this newsletter, please call (512) 206-9314. 

The Outreach Programs are funded in part by IDEA-B Formula, and IDEA-D Deaf-Blind Federal grants. Federal funds are administered through the Texas Education Agency, 

Division of Special Education, to the Texas School for the Blind and Visually Impaired. Texas School for the Blind and Visually Impaired does 

not discriminate on the basis of race, color, national origin, sex, religion, age or disability in employment or the provision of services. 



Texas School for the Blind and Visually Impaired 
Outreach Department 
1100 West 45th St. 
Austin, Texas 78756 



Cathy Johnson 

Kentucky School for the Blind 
1867 Frankfort Avenue 
Louisville, KY 40206 



NON-PROFIT ORG. 
U.S. POSTAGE PAID 
AUSTIN, TEXAS 
PERMIT NO. 467 



SEE/HEAR 



A QUARTERLY NEWSLETTER ABOUT VISUAL IMPAIRMENTS AND DEAFBLINDNESS FOR FAMILIES AND PROFESSIONALS 
A collaborative effort of the Texas School for the Blind and Visually Impaired and Texas Commission for the Blind 



Summer 2000 



Volume 5, No. 3 



Table of Contents 

FAMILY 

Ben's Eulogy 2 

Aging, Loving, and Loss 3 

Franky's First Steps 4 

Parents Share Early Experiences at the Parent Summit 6 

Future Horizons Review 8 

Usher Teens and Families Come Together 9 

Through a Teen's Eyes 10 

PROGRAMMING 

Toilet Training Children with Deafblindness: Issues and Strategies 12 

Minimal Losses... Major Implications 19 

The Thread: To Socialize or Not to Socialize 24 

SYNDROMES/CONDITIONS 

Texas Deafblind Census 2000 26 

Interesting Facts from the Year 2000 Annual Registration of Students with Visual Impairments 27 

Moebius Syndrome: A Life Without Smiles.... 27 

NEWS & VIEWS 

Materials in Spanish for Families of and Interventionists Serving 

Young Children Who are Blind, Visually Impaired, and Deafblind 30 

DBMATandNFADB 31 

United We Stand X 32 

Information about Possible Changes in Texas Teacher Certification Requirements 34 

Department of Education Issues Updated Policy Guidance on Educating Students Who Are Blind 36 

Short Programs Scheduled for the 2000-2001 School Year at TSB VI 38 

Classified 40 



Kate's Corner 



So much for the notion of the lazy, hazy summer days with not much to do. As July draws to a close and we 
anticipate school beginning in several weeks, most of us here in Outreach are wondering where the time has flown. We 
must be having fun. In June we were involved with a workshop for parents and young children called "On the Move" 
and Texas Focus took place in El Paso. At the end of the month, I was fortunate to be able to attend back-to-back 
workshops in Minnesota sponsored by Hilton Perkins, NFADB, and NTAC focusing on Family Specialists and 
providing effective technical assistance to families. Summer Technology training begins next week, and work has 
begun towards developing new workshops and the Texas Symposium on Deafblindness. There are a variety of other 
projects cooking and some changes in staff to round out August. 

Kate's Corner - continued on page 37 



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Editor 's note: You can 't work in the field of special education and disability very long without experiencing 
the death of a child. Not everyone is comfortable talking about it - but it happens, with and without warning. 
Families with chronically ill children face this possibility daily. We all experience loss in our lives whether it is 
a marriage ending, a child graduating, a job ending, or a relative dying. Even if the change is good, letting go 
of your old identity with its roles and responsibilities is a process that takes time. My parents are still living, but 
I wonder, will I no longer feel like a daughter when they die? As Dr. Ken Moses says, "There is no right or 
wrong with feelings, they are just there. " One way of living through the grief process is writing about it. The 
following articles written by two moms and a grandmother reveal their varied reactions to the loss of a child. 
All three are insightful and comforting. We hope their words will help you better understand their grief and also 
their joy in sharing the beautiful though brief lives of these children. 



Ben's Eulogy 

By Alison Rickerl, Mom, Houston, TX 

No more oxygen tanks, pulse oxymeters, and vile medications. No more standers and wheelchairs and AFOs. No 
more nebulizer treatments and cleaning vomit off the carpet No more late night emergencies, hospitalizations, tubes, 
wires, and syringes. Blessed relief... No more hug and kisses. No more crooked smiles. No more delighted full-body 
wiggles. No more roughhousing on the floor. Wretched grief... 

My son died. Some say there is no greater pain than to lose a child. I'm sure others feel that pain every bit as keenly 
as I do. Ben touched many people very deeply. That pain would not hurt so much if the love was not so deep. There 
is no greater love than that of a parent for a child. 



! 



Benjamin was only 3 years old when died. In three short years, Ben faced more medical problems than most 
people do in 75 years of life. His disabilities and health impairments have hardly been conducive to a "normal" lifestyle. 
Life has been difficult for all of us these past three years - but I would not trade a second of it Ben was an incredible 
gift of love, and I am so grateful for the time I had with him. 



Many years ago, I prayed for patience. So God sent me Meglyn, my first-born, and I learned. But I was still 
dissatisfied with my ability to cope with such an energetic child. So I prayed for more patience. And God sent me 
Madison. Between the two of them, I learned how to be patient with all kinds of children. But still I didn't think I was 
quite where I needed to be. So I prayed some more, and God sent me Ben. That's when I learned how to be patient 
with adults, too. 

Madison and Ben have both brought into my life such diversity and understanding of the bigger picture. From the 
moment, five years ago, when the doctor shook his head and said my daughter would never see, I knew life would 
never be the same. I was not allowed to stay the same, to become stagnant in my abilities and thinking. In advocating 
for my children's needs in the education, social service, and medical systems, I grew in every way. Meeting their needs 
has done more than any other experience I've ever had to help me purge selfishness and pettiness from my heart They 
have helped me develop a deeper understanding and compassion for all people. My children have molded me to be 
confident in my ability to tackle the various hurdles in those arenas. Ben, especially, gave me the courage to face my 
worst fears and still do the best job I could as a mother. 



Ben has moved me to learn more, do more, and be a better person. Even thought he was blind, he gave me eyes to 
see what I had not seen before. Even though he was deaf, he taught me to listen with an open heart and mind. Even 
though he was very sick, he gave me enormous strength. Ben gave me such joy. The smallest things gave me the most 
enormous pleasures. The brief moments that I could hold his hand, the rare time he was able to hug back, the times he 
was able to let me hold him for hours, and even roughhouse, the beautiful smiles, the stiff wiggle of his body when he 

2 



was delighted . . . these moments were better than vacations, promotions, and fancy parties. With his needs for 
expensive health care and equipment, I knew I'd never drip with diamonds . . . better, I dripped with joy and happi- 
ness. 

Because of Ben, I have known complete joy and happiness. I thank God everyday for sending him to me. 

I believe that Ben has fulfilled his purpose here on Earth. Many of us spend decades trying to do what we are called 
to do - invent something, improve something, whatever. Some never do fulfill their calling. In just three short years, 
Ben has done more; through him, souls are saved. He has touched each of us deeply and we are forever changed. 

To those of you who were afraid of his disability and health impairments, please let his life and death inspire you to 
reach out to others in need. If you are lonely, take heart that it is in the giving of love to others that you learn to feel truly 
loved. 



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I know you feel very sad for me. But it is that feeling - that ability to truly feel caring and giving - that inspires the 
best in all of us. Don' t turn that off. Let that pain turn into the glow of joy and the ability to easily give to anyone in need 
at any time. In that way, my loss is not in vain, and Ben's life and death will have helped so many people. 



Aging, Loving, and Loss 

By Brenda Placette, Grandmother, Houston, TX 

My three-year-old grandson, Ben Rickerl, died last Tuesday night For the last fourteen months of his short life, his 
only nutrition was Neocate, a special formula available by prescription only, which his parents administered to him 
through a bottle. Because of Ben's severe allergic reactions to food, it was the only nourishment he could tolerate. In 
early 1999, an attempt to feed him goat's milk, recommended by one of Ben's doctors, resulted in anaphylactic shock 
and an extended stay at Texas Children's Hospital in intensive care. 

Ben was born with Joubert Syndrome, a very rare genetic disorder. His 7-year-old sister, Meglyn, is unaffected, 
but Madison, age 5, also suffers from the syndrome and is blind. Her speech and gait are affected by hypotonia, low 
muscle tone, but she is a happy child who is attending kindergarten. Joubert's is characterized by multiple sensory and 
physical disabilities as well as health impairments. 

In Ben, Joubert's manifested itself in particularly insidious ways. Although classified as deafblind, he had some 
hearing and loved reggae music and the sound of his Daddy's voice. He had many health problems resulting in 
numerous hospital stays. He had to have round-the-clock care to access the medications, nebulizers, and interventions 
to keep him alive. 

Ben had started school two months ago, and loved the wheelchair lift on his special education bus. His teacher, 
Mrs. Cockrell, and his two aides reported progress, and his mom and dad noted excitedly that he was making new 
sounds. 

By the time Ben was born, my daughter Alison was already immersed in the special world of the disability commu- 
nity. The Rickerl home was full of people constantly: orientation and mobility and vision teachers; occupational, 
physical, and speech therapist; people delivering and setting up durable medical equipment. Alison sought out all 
resources for Madison, joined many disability groups, and became a leader in some. 

In March of 1997, the Texas Association of Education and Rehabilitation of the Blind and Visually Impaired named 

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Alison, Exceptional Parent of the Year. Their annual conference was held in El Paso, and I attended to help with Ben, 
since Alison was nursing. As I sat in the audience of 200 educators holding my precious grandson, Alison accepted the 
award and without notes thanked two-dozen people in the audience by name and talked about the importance of 
teamwork between parents and teachers to optimize educational outcomes. It was a bittersweet moment: I thought 
what an incredible person my daughter is becoming through the gifts of these special children. 

When Ben died, Alison and Ted's first thoughts were how to help other parents who have children with Joubert's, 
and they donated Ben's brain, kidneys, and retinas - the organs most affected - to the Joubert Foundation. 

One hundred and twenty-five people attended Ben's visitation and five-hundred attended his funeral mass. Shortly 
before the graveside service began, my 90-year-old great-great Aunt Peachie walked unsteadily down the long gravel 
road to the gravesite, aided by a walker. Her daughter, who is waging her own battle with pancreatic cancer, accom- 
panied her. At the service, my daughter Alison eulogized her only son. She said she felt that Ben had served his 
purpose in life — something that takes many of us years to identify and fulfill. He had saved some souls and touched 
so many lives. 



The disability community is a big, extended family. They share their pain, but they also share their joy. Grounded 
in realities that are sometimes incredibly harsh, they are very connected to each other emotionally. I am so grateful that 
I live in this world. 

Growing older is always about loss. We all lose our parents. Our joints, muscles, and organs react differently. Our 
spouses and friends die; occasionally we lose a child or grandchild. It hurts; for a while we think we may not be able 
to endure the pain. 



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On the three-hour trip to Union Cemetery in Teague, Texas bright splashes of bluebonnets and Indian paintbrushes 
adorned the countryside. I thought, "Right now babies are being born, people are falling in love and getting married, 
people are celebrating their 50th anniversaries, and people are being buried" Life is glorious and it is also very painful. 
In the past week, I've witnessed what people refer to as the "triumph of the human spirit over adversity" many times. 
As the small white coffin was being closed for the last time, five-year-old Madison said, "Bye-bye Little Ben." All of 
us who knew him and loved him are better for that experience. Isn't that the ultimate measure of a life? 



For more information about Joubert Syndrome, visit <www.joubertfoundation.com>. 



Franky 's First Steps 

By Connie Vasquez, Mother, Longview, Texas 

In the Spring 2000 issue of SEE/HEAR I wrote the story of our son Franky. In case you didn't get a chance to read 
it, here is a brief summary. Franky was bom with microcephaly, calcifications of the brain, blindness, deafness, severe 
developmental delay, cerebral palsy, seizures . . . Over time he developed severe reflux. Not only that; his jaw was 
receded and his soft palate extended way into his throat, constricting his airway considerably. He had to be catheter- 
ized, suctioned, tube-fed, plus he took about eleven medications 2-4 times each day. We had been warned that he 
could die of pneumonia or apnea (stop breathing). 



I was very saddened to read a few months back of the problems people have faced taking their disabled child to 
church. I know some people don't consider church a very important part of their lives. Still there are those of us who 
find our strength and comfort in church. To those of you who have encountered difficulties, I encourage you to keep 



looking. There are churches out there that care; I know from experience. We have lived in three different places since 
Franky was born in 1993 and belonged to three different churches. We have never encountered difficulties because of 
Franky's disabilities. In the first two churches, Franky was usually in the nursery. The ladies spoiled him rotten. When 
Franky was two years old we moved to Longview, Texas and joined the Longview Baptist Temple. We became part h^ 
of the Spanish and the English church. The English church is very large with four nurseries and many Sunday school ^ 
classes. The nursery superintendent told me I could put him wherever I wanted. As he grew older, we decided to put 
him in Sunday school to stimulate his development. Most recently he was in the three year old class. The teachers 
accepted him eagerly and encouraged the other kids to interact with him. 



Eventually we put him in the regular church services. He was very noisy sometimes. His breathing sounded like a 
loud snore. When I asked the pastors what to do, they told me not to worry about it, everyone would get used to it. 
No one ever complained or asked us to take Franky out of a service; although I have chosen to do so on occasion, 
especially when he threw up! 

When my daughter, Teresa, was born on a Saturday evening, it was the Spanish pastor's wife who took care of 
Franky, making sure he got his food and medication. When Teresa had emergency surgery on a Sunday at seven 
weeks of age, one nursery worker dedicated her whole time to make sure Franky got fed. Now we have family living 
nearby. As Franky became more difficult to care for we did not use the church people as much, but they were always 
there for us, praying and giving moral support Their support, that always has meant so much, became a lifeline as 
Franky's health and quality of life rapidly began to decline. 

When Franky was awake, the only way he could breathe without struggling was if we sat him in front of us and 
pushed his jaw forward to open his airway. However, his left hip had become dislocated, so sitting for any length of 
time was very painful. He became very fussy, and we tried changing his medicines and dosages. It didn't help. It got 
to the point where the only time he was comfortable was when he was sleeping on his stomach. Unfortunately, his 
feeding tube had become enlarged and lying on his stomach caused it to leak. The surgeon experimented with different 
sizes of tubes; each would last about a week before it would start leaking. The entire contents of his stomach would 
leak out in just few minutes. 






Franky was miserable, and it was only getting worse. As much as we loved him, we were beginning to realize it was 
time to let go. The pediatrician suggested a "do not resuscitate" order. After much advice, thought, and prayer we 
decided that was best for him, no drastic measures to revive him would be taken. 

In three weeks time Franky got a kidney infection, pneumonia, a staph infection, and a fungal ear infection. He was 
deteriorating rapidly. He came down with a head cold, and I took him to the doctor just to be on the safe side. 
Everything checked out fine. Early the next morning Franky seemed fine, but by noon his breathing sounded rough. 
His temperature rose to over 107 degrees! Since my other children were at home with me, I called an ambulance. 

When we finally were able to see Franky at the hospital, they told us he was dying. The pediatrician met with us to 
explain that the x-rays showed a mild case of pneumonia. She felt that either the bacteria had entered his bloodstream 
causing overwhelming blood poisoning or it was meningitis. His white blood count was low which meant he wasn' t 
fighting it She didn't give us much hope. He had a seizure that lasted about an hour, and then he fell asleep. A short 
time later Franky decided to go to heaven even though they tried briefly to resuscitate him. 

Our friends, our church, the East Texas Angel Network, and even total strangers rallied around us. We had a 
beautiful funeral that thanks to the Angel Network and our church, cost us almost nothing. Their support continues to 
see us through. 

It has not been easy losing our "baby." We loved him dearly. I never really minded carrying him, feeding him, 

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cleaning up afterhim, giving him medicine, going on constant doctor visits, or any of taking care of any of his needs. But 
when he started suffering, I couldn't bear that. 

We know he is in heaven, where there is no more pain or suffering. I see him talking, taking his first steps, running, 
and jumping. I would never wish him to come back, though I miss him terribly. Sometimes I wish I could hug him one 
more time, run my fingers through his hair, and kiss him. He is in a better place. I know I will see him again some day. 

At Franky's funeral the church was nearly full. Many people took off work just to come. They all did this for a boy 
who never spoke a word to any of them, but something in his life impacted their lives. I know that without our church, 
we could have never made it through this loss. I encourage you other parents who want to find this kind of church 
community not to give up. Keep looking until you find a church that can make a place for you, your family and your 
child with a disability. 



Parents Share Early Experiences at the Parent Summit 

By Paige Parrish, Parent, Tyler, TX 
bevotex @ airmail .net 

Editor's note: There are laws, statutes, and memorandums of understandings between agencies that are 
written to insure that families of children with disabilities get the services they need in a timely fashion. Unfor- 
tunately they can be pretty meaningless if the public is unaware of them. Typically the public only becomes 
aware when an issue touches their lives in a personal way. Most of the people in Texas will not experience the 
impact of a visual impairment on their child's lives. Since most of you reading this newsletter have been 
touched with the issues of blindness it is up to you to help keep the public aware. As the parents who gathered 
for the Parent Summit in Austin learned through their discussions, there is definitely a role for parents to play 
in helping the general public learn about blindness and visual impairments and the resources that are available 
in Texas. 



An extraordinary event occurred on April 9 th at the Texas School for the Blind and Visually Impaired in Austin, 
Texas. Experts from around the state convened to discuss issues that affect our children. There were no chiefs of state 
or heads of government agencies attending this event, just the heads of households. Parents of children with visual 
impairments from around Texas were convened to give our valuable opinion about how to make a better future for our 
children. Under the guidance of a facilitator, we grouped geographically to identify existing services in our area. We 
brainstormed together to identify our needs and the needs of our children. The general consensus was that chief among 
all the needs we had was getting information about services and resources earlier in the life of our child. The stories we 
shared about our experiences with the initial diagnosis and the early experiences that followed were all too familiar. One 
phrase that continued to pop up like a jack-in-the-box was "first point of entry." 

I am the parent of a seven-year-old visually impaired child named Alexandria. My "first point of entry" was at the 
office of my daughter's pediatrician. After noticing some irregular eye movements during a checkup he referred us that 
same day to a neurologist at a children's hospital. I couldn't believe it when they told me they suspected that my two- 
month-old baby had a tumor on her optic nerve. After conducting more tests, they determined that this was not the 
case and sent me to a pediatric neuro-ophthalmologist. There it was decided that Alex did have a severe visual 
impairment. Her bizarre eye movements, they felt, were indicative of a childhood cancer called neuroblastoma. This is 
the diagnosis we lived with for about a year. 

Needless to say, the vision issue definitely took a back seat to cancer. Our family was emotionally devastated. Not 
once did any of the medical professionals say, "Hey, this is a really difficult time for you. Let me hook you up with the 

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right people to make it a little easier." Financially this was also quite a burden on our family since my husband was a 
medical student The stress and strain on our marriage, I don't think I even have to mention. Here we were a part of 
the medical community, but no physician referred us to someone who could give us direction and support! My husband 
and I are fairly intelligent people, but we did not know what to do. 

I was in denial, and my husband naturally focused on the medical aspects of our daughter's condition. Had we been 
referred to a social worker, I think we would have been given some guidance about what to do. Things like applying for 
SSI benefits or getting services from Texas Commission for the Blind probably would have made our lives a lot 
different. (Editor's note: The Disability Determination Unit of the Social Security Administration forwards all 
applications with the diagnosis of blindness to the Texas Commission for the Blind for rehabilitation services.) 

The good news was the cancer did not thrive, but the bad news was the visual diagnosis looked grim. The doctor 
called it Leber's Congenital Amaurosis and told us in a cold, clinical tone, "Your daughter's condition will end in total 
blindness, so you should prepare her for a school for the blind." The doctor did not seem to consider my frame of mind. 
My reaction was, "My daughter is blind and now you want me to send her away!" 

I continued to have a healthy dose of denial and did not ask any questions. I did not know that all babies with a 
hearing or vision loss could receive early intervention services in their home. I did not know there are federal and state 
regulations requiring all professionals to refer children, birth-three, with a developmental delay to Early Childhood 
Intervention (ECI). Based on all the similar stories that were shared at the Summit, apparently other parents and 
professionals didn't know this either. As a parent I want to know if it is possible to tell physicians that referrals are not 
just a vague, ethical obligation? I feel they need to be held more accountable for helping parents and others connect to 
these other support resources. As an enlightened parent I can do my part by sharing my knowledge and experiences 
within the medical community. I can let them know that I am available to offer other parents support and information 
when they face similar concerns. 

At some point I finally called the Texas School for the Blind & Visually Impaired and was given support, referrals 
and a world of information. After ECI evaluated Alex, the lack of early intervention in my daughter's life was evident. 
She displayed poor overall muscle tone, especially in the hip flexor area. This occurred because her vision loss 
reduced her motivation to move and also made her fearful of movement. She was very passive and quite content to sit 
in one spot and play with one toy. ECI referred me to my local school district to receive vision and orientation and 
mobility services. 

As parents talked throughout the day-long Summit, a number of things became clear to me. I'd like to share these 
insights with you other parents who may be reading this article. First, investigate what resources are available to you 
and your child. Make sure you know the laws that can impact your child and your family. Learn about the appropriate 
channels for initiating change. Find out your legislative representatives' names and how to contact them. Remember 
that one parent can make a difference. 

By attending workshops and conferences I am learning about the needs of my child. My daughter is out there 
advocating for herself at the age of seven ! I hope that I have been a good example for her through my efforts to make 
a difference in the lives of visually impaired and blind individuals. 

I look toward the future with much optimism realizing there is a lot of work to be done. I hope I can encourage you 
to become knowledgeable about the issues surrounding the education of your child. I am grateful for the opportunities 
I have had to educate myself. I feel that I have fulfilled a vision that Phil Hatlen has of parents of walking into an ARD 
meeting as equally informed as the educators about the educational needs of their child with visual impairments. 

At the Summit the camaraderie between the parents was impressive. A sort of kinship was formed with the sharing 

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of experiences and information. The incidental tips I got from parents that were farther down the road will come in 
handy. We discussed the benefits of forming parent support groups. I know this is not always feasible with the busy 
lives we lead, but at least extend yourself. Offer your name as a contact for other parents who may just be learning 
about their child's visual impairments. Let your TCB caseworker, social worker at your local hospital, your ophthal- 
mologist, your pediatrician, and your vision teacher know that you are willing to visit with another parent or share 
information about services you have found in your area. It is my dream that one day all these professionals will work 
more collaboratively together to make the lives of our children meaningful and successful. 



Future Horizons Review 

By Jean Robinson, VI Outreach Family Support 

After attending two "Future Horizon Retreats" (one in Dallas and one in Corpus Christi) I know firsthand that the 
time and money that goes into making this event happen is time and money well spent I know this because of my 
personal experiences at the retreats, but also from the feedback I have received from the participants. About sixty 
families with visually impaired children spent a weekend together learning about themselves and others and also having 
a great time. In Corpus Christi there was an opportunity to tour the aircraft carrier, S.S. Lexington, and see the ocean. 
In Dallas we paid a visit to the Arboretum gardens. In both locations we had opportunities to swim, play Bingo and 
other games, and talk to adult mentors with visual impairments. The families who attended express the benefits of this 
experience best: 

"Our 5-year-old enjoyed learning how she could help her big sister." 

"I gained insight into common problems faced by all parents of visually impaired." 

"Our family gained better understanding of my son's disability." 

"My daughter enjoyed the interaction with the other visually impaired kids and it increased her confidence." 

"Seeing college students with visual impairments helped my daughter build future goals." 

"I realized how my son can go by himself a lot more than I would let him !" 

"My son gained confidence and hope." 

"His brother seemed to understand him better." 

"I feel more secure regarding Ben's future." 

"My daughter is more open to accomplishing more." 

"My son's abilities and belief in his capabilities has greatly expanded." 

"Elizabeth enjoyed socializing with the other adults and kids with her same disability." 

"My daughter was proud of being the one responsible for our family getting to go on this trip." 

"The guest speaker motivated us to think that Lauren could do anything, even be a parent." 



Personally, I will never forget the look of awe on a young brother's face when he saw the ocean for the first time. 
He was so overwhelmed that he wasn' t even interested in eating ! 

Our next "Future Horizon Retreat" is in September in Galveston and will focus on children ages 6-9 with visual 
impairments. Remember I mentioned time and money? The money comes from a generous grant from the Texas 
Commission for the Blind. The time comes from many people and sources. If you are visually impaired and interested 
in being a mentor to these families contact me at 5 1 2-206-941 8 or at <jeanrobinson@tsbvi.edu>. Hope to see you in 
Galveston! 

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Usher Teens and Families Come Together 

By David Wiley, Transition Specialist, TSBVI, Texas Deafblind Outreach 

During the statewide Symposium on Deafblindness held in Austin in February 1998, a group of parents who have 
teenagers or children with Usher Syndrome met and decided they would like to stay in touch with one another. Several 
of these families met together with Texas Deafblind Outreach later that year to plan how best to support and stay in 
contact with each other. They decided that they would like to have regular retreats for the entire family. The first Usher 
Syndrome Family Retreat was held in the summer of 1999, and was a successful and enjoyable experience for all. This 
year, on April 29 and 30, the second Usher Syndrome Family Retreat was held. 

THIS YEAR'S RETREAT 

Nine families met for the weekend in Austin where they heard speakers, talked to nationally recognized profession- 
als, and had fun with one another. Texas Deafblind Outreach sponsored the event, and provided assistance with travel 
expenses to enable families from across the state to participate. Separate sessions were held for the young people with 
Usher, the parents, and the siblings. Some grandparents, and friends, and other family members were also in atten- 
dance. In addition to the breakouts for specific groups, time was planned for everyone to get together just to have fun. 

The sessions for the teens with Usher were led by Harry Anderson and Jamie McNamara, and were based on the 
theme of leadership. Mr. Anderson is a counselor at the Florida School forthe Deaf and the Blind in St Augustine. He 
is also able to share his experiences as someone with Usher Syndrome, and the past president of AADB, the American 
Association of the Deaf-Blind. Ms. McNamara works in Shawnee Mission, Kansas as a Technical Assistance Spe- 
cialist for NTAC, the National Technical Assistance Consortium on for Children and Young Adults who are Deaf- 
Blind. She also has the perspective of an adult with deafblindness. The teens learned about self-determination and 
leadership skills. They also shared their experiences and their goals. Several members of the group had met the 
previous year, and were able to catch up with one another. Everyone also got to make new friends. 

The parents received information from Dr. Sandra Davenport, of Minneapolis, Minnesota. Dr. Davenport is one of 
the leading authorities on Usher Syndrome in the nation. In addition to workshop sessions, she met individually with the 
families to answer questions and provide in-depth information. The parents also heard from Brad Carlson, Deaf-Blind 
Specialist with the Texas Commission for the Blind, and learned about TCB services related to college and career 
planning. Jeff Anderson of the Southwest Collegiate Institute for the Deaf provided information about his school. 

The siblings had a chance to share feelings about their families, and have their questions answered. Roy Martz, a 
social worker from Texas School for the Blind and Visually Impaired, helped guide the discussions. 

In addition to these learning experiences, there was time for socializing, swimming, games, and exploring the 
Internet A highlight of the weekend was a series of short skits performed by Harry Anderson and his son, Jeff, which 
kept everyone laughing Saturday evening after dinner. When the weekend was complete, the response of the partici- 
pants was positive, and plans were made to hold future Usher Syndrome Family Retreats. 

GETTING A NATIONAL PERSPECTIVE 

One outcome of this year's retreat is that a three-person team from Texas will be attending a national seminar on 
self-determination for teens and young adults who are deafblind. This event is co-sponsored by NTAC, and will be 
held in conjunction with the meeting of AADB in Columbus, OH. The team is composed of a teenager with 
deafblindness, a young adult mentor who is deafblind, and a professional from the state deafblind project. The young 
people have made a commitment to stay in contact after the workshop, and provide leadership to other young people 
in Texas. 



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USING THE INTERNET TO STAY IN CONTACT 

Another outcome is the creation of an eCircle for Usher families. An eCircle is a private web site for a group of 
people with a common interest. For privacy, people can only access the site by invitation. This web site is a place to 
post announcements, have discussions, post photographs, and have real time "chats" with other circle members, 
among other features. Checking the site on a regular basis is one way to stay in touch, and support one another. If you 
have an interest in the eCircle, contact David Wiley or Kate Moss at Texas Deafblind Outreach. (Kate 
<katemoss@tsbvi.edu>; David <davidwiley@tsbvi.edu>) 

Some teens and other family members from all over the state are also privately communicating through e-mail. 
Those who want a broader e-mail circle can find it through listserves that are organized across the nation. A listserve 
is an e-mail distribution list for people who share an interest There is one very active listserve about Usher that is used 
primarily by adults with Usher Syndrome. There is another for teens with deafblindness. Information on being part of 
a list can be found through the DB-LINK site at <www.tr.wou.edu/dblink>. 



CONCLUSION 

Families including teens and children with Usher Syndrome in Texas have expressed an interest in remaining in 
contact and supporting one another. These families are spread throughout the state, but have been gathering for 
retreats, and staying in touch electronically. The next get-together for the parents has been planned as a part of the 
statewide Symposium on Deafblindness to be held in Dallas in on February 15-17, 200 1 . For more information about 
Usher Syndrome, or the family activities, contact Texas Deafblind Outreach at Texas School for the Blind and Visually 
Impaired. If you are interested in speaking directly to another family, several families have expressed a willingness to 
be contacted. For Usher Syndrome, Texas families are finding support from one another. 



Through a Teen's Eyes 

By Wayne Cuthbertson, 19 year-old law student 

at the University of Aberdeen, Scotland 
Reprinted with permission from Exceptional Parent, July 1999 

Editor's Note: This article is reprinted from the July 1999 issue of Exceptional Parent magazine which is 
available by subscription at the toll-free number 1(877)372-7368 or <www.eparent.com>. It originally ap- 
peared in the February 1999 issue of The Moebius Syndrome News. Information about Moebius Syndrome is 
available at (660) 834-3406 or <www.ciaccess.com/moebius> or read the article on page 27. 



As a child, the fact that I have Moebius syndrome never troubled me at all. From a fairly young age, I have been 
aware of the fact that I am different. It never had a name; it was just there all the time. To me it was the things I could 
not do: I could not smile, move my lips, move my eyes from side to side or suck properly. I was just different from 
everybody else. There were always people who pointed at me, made jokes and comments, and tried to show up my 
deficiencies, but I let it all wash over me. I had lots of support, and I had a strong sense of self-worth and inner belief 
and confidence. I do not know when it happened, but suddenly when I started high school, among lots of new people 
and in a different place, the world seemed bigger and stranger, and infinitely more daunting. For the first time in my life, 
I was not just aware that I was different, I was acutely aware. Perhaps it is this increased level of consciousness that 
comes with adolescence that helped to shape me. Forget the warm hugs of your parents and the support of your 
friends. When you hit your teens, it is time to stand up and be counted as a person. Here is a little of what I have 
learned, and some advice I can give to anyone who has Moebius syndrome or any other disability. 

1. You need to get over being so aware of how different you are, that it makes you shy, or overly sensi- 
tive. Believe that you are a beautiful person; believe in yourself. 

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2. Never forget that we are each our own individuals formed in a singular and unique way, and never let 
anyone say you are not special. There is no such thing as perfection. Perfection is an unattainable ideal 
which can be striven for but never achieved. If anyone tells you that you are not "normal" ask them what 
"normal" is. That often makes them think, but some people are remarkably cruel at this age. If they still 
persist, tell them: "I don't care what you think, none of us are 'normal' we are all different and beautiful in 
our own ways." If they laugh at you, then have a laugh yourself as they are probably so immature, close- 
minded and wrapped up in their own prejudices that it isn't really worth caring about what they think. 

3. When you talk face-to-face with someone, maintain eye contact. It oozes self-confidence, and people 
will respect that Also remember that it is not always how you say things, but what you say that counts. If 
you can come to terms with being different, then so can other people. Just believe in yourself. 

4. It all comes down to confidence. This is what getting through your teens is all about. You need to love the 
person you are. Stand up for yourself and never let anyone brush you off. Most of all, be assertive. Show 
people what you are like on the inside, and you will find that they will like you more than you think. Have 
confidence in your abilities, and let nothing stand in the way of what you want in life. Love and believe in 
yourself, and you will go a lot further than you think. 

5. Making friends can get much tougher as you mature. As you become aware of how different you are, 
don't be afraid to put yourself out there when you meet someone new. If you can't lift your head up and offer 
them a warm smile, let your inner warmth come out in other ways. Be honest and open - other people will 
always respect that Be confident when meeting people. Getting involved in lots of group activities and 
sports, if you are able, will expose you to new people all the time and allow you to grow in stature as a 
person. Try something new! 

6. The other sex: Don 't be afraid to talk to the other sex. If you have confidence in yourself then anyone 
will like you. But no one who cowers away in the corner ever has any success. If someone likes you, then 
they will like you as the person you are. If they don' t like you because of the condition you have, then they 
are probably not worth knowing anyway ! Try not to be too shy, although I know it can be very difficult. 
Now, kissing for someone who has Moebius syndrome is quite a proposition. I mean, if you can' t move your 
lips, how can you kiss someone properly? The simple answer is you can't However, you would be sur- 
prised at what can be achieved with a little effort. Kissing is possible just don't be too embarrassed to try. 
Use what abilities you do have the best way you can. 

7. The teen years can be a hard period. It was hard for me. Come to terms with it and with your place in the 
world. I have always found that it helps to be able to just have a quiet "thought" about things to yourself. 
Take a step backward, and upward, and have a look around; you will often see yourself and other people in 
a different light 

8. Life is a constant learning process. There is no such thing as failure, only feedback. 

9. There were times during my teens when I thought I was the only person in the world like this, and I 
was just being punished I often felt like, "Why do I bother when people only seem to try and knock me 
down?" Well, I have been there and have gone through it and I am 10 times better for it. I am nowhere 
nearly as shy as I used to be. (Shyness isn't necessarily a bad thing. It is often a sign of sensitivity.) 

1 0: Enjoy your teens. While it can be one of the hardest times in your life, it can also be one of the happiest 

Much of this advice may apply all throughout your life. During your teens, however, you are more aware of your 
own idiosyncrasies, making this time even more difficult. Never forget those who love and support you, but that they 
can't be there forever. That is why we all need to build our futures through our own strengths and courage. 

Parents may wonder how they can help their child to do this. It seems to me the greatest thing parents can give to 

11 



t 



5 



their children who have Moebius syndrome, or any other disability, is love. My mother never treated me any differently 
than my brother and sister- she loved me just the same. Giving children the strength and confidence to love the people 
they are and believe in themselves will get them through the most difficult times. This will help them become more 
independent and able to tackle the world on their own. Parents are a solid foundation for children to build from. With 
a loving parent who encourages, supports, and believes in them, I see no reason why children who have Moebius 
syndrome, or any other disability, cannot achieve a great deal. I don't intend to let it hold me back. 

Many will tell you that people who have Moebius syndrome can't smile, but I have never believed them. I can't 
physically smile, but I have been smiling all my life. I feel warm and happy and joyful inside - isn't that what smiling is 
all about? People who know you well will know when you are smiling. I have always believed that while I can't make 
my lips form the shape, everything else is there. 



Toilet Training Children with Deafblindness: Issues and Strategies 

By Craig Axelrod, Teacher Trainer, TSBVI, Texas Deafblind Outreach 
A version of this article first appeared in the October 1992 edition of PS. NEWS ! ! ! 

Editor's note: This article is based on a workshop presented by Ray Condon in July 1992. Additional 
information about routines can be found on TSBVI's website, <www.tsbvi.edu>. See <http://www.tsbvi.edu/ 
Education/vmi/routines. htm> or <http://www. tsbvi. edu/Outreach/seehear/archive/routine. html>. 

Independence in toilet training is a milestone celebrated by the children who achieve it and their grateful parents. 
Families and educators often experience frustration, disappointment and resignation when faced with the challenges of 
toilet training a child who is deafblind. Many factors can influence toilet training efforts; such as physical maturity, 
awareness of self and the environment, positive relationships with other people and the ability to communicate with 
them. All factors must be considered when toilet training a child who is deafblind. A team approach is also essential 
for success. People who can contribute important knowledge and experience to a team include the child's parents and 
siblings, classroom teacher, intervener, VI teacher, communication specialist, OT, PT, school administrators and a 
medical doctor. 

COMPARISON OF TOILET TRAINING PRACTICES 

Toilet training approaches for children with disabilities often differ drastically from those used with nondisabled 
children. It's suggested that a "normal" child be taught in a low-key manner, with social praise and reinforcement. 
Books, verbal explanation, modeling and observation are used to teach language concepts, responsibility, competence 
and independence. The child sits on the toilet for short periods of time. If there is resistance to toileting, training efforts 
are postponed. Use of punishment is not recommended, and can be considered harmful. In contrast, the best known 
programs developed for children with disabilities recommend rigid training procedures to be followed intensively for 
several hours every day. Sessions on the toilet may last up to 25 minutes of every half hour. Motivators might include 
food, toys and other primary reinforcers, or secondary reinforcers such as tokens, adhesive stickers and checkmarks. 
Overcorrection (for example, cleaning the entire floor of a room where a toileting accident occurs) and positive prac- 
tice (repeating the steps of a toileting sequence multiple times) are procedures often used to end toileting accidents. 
Resistance to toilet training is met with stronger rewards or punishers. Why are our educational strategies with disabled 
children so much more "heavy-handed" than the ways we teach children without disabilities? 

PROBLEMS WITH TRADITIONAL PROGRAMS 

There are drawbacks to many of the toilet training programs developed for children with disabilities. 



12 



Many of these programs have intensive time requirements 

The most popular of these programs requires an intensive commitment of time and attention from those working 
with a child. In a school setting this is sometimes possible because several adults share the responsibilities of managing 
a classroom and its students, or a single adult is responsible for providing one-on-one instruction to the student who is 
deafblind. At home, however, a family often has fewer people and limited time to devote toward this kind of effort. 

Tolieting programs have a low success rate 

In acquiring any new skill, a learner must consistently experience a 70% success rate (7 correct responses to every 
3 mistakes). The obvious toileting mistake is an accident. A less obvious mistake is sitting on the toilet without 
"results." Toileting programs that incorporate long, unproductive commode sittings increase the percentage of errors, 
and ultimately make learning more difficult. 

Children don't make the connection between their behavior and the resulting consequences 

Children with deafblindness often have limited communication skills. They may not independently distinguish im- 
portant from unimportant information or see relationships between their behaviors and the resulting consequences. 
They might not understand that overcorrection or positive practice are responses to a toileting accident While an adult 
is responding to wet or dirty pants, the child might think the consequence is related to something else that coinciden tally 
occurred at the same time, such as engaging in a self-stimulation behavior, patting the cat, or playing with a light switch. 
If independent and consistent toileting is the team's goal, requiring a child to repeatedly "practice" the toileting se- 
quence or clean up the floor will not achieve this result These activities don't teach the desired behavior, which is 
successfully voiding in the toilet It is good for children to develop a sense of responsibility about caring for themselves 
and their environments. There are also many naturally occurring opportunities to practice removing and putting on 
clothes, such as before bath time or during morning dressing. Implementing overcorrection or positive practice proce- 
dures as consequences of accidents, however, will not teach a child to use the toilet appropriately. 

Overcorrection and positive practice feel like punishment 

Another problem with consequences such as overcorrection and positive practice is a person's understandable 
attempts to escape and/or avoid the people, places and activities associated with what is seen as punishment. By 
making toileting an unpleasant experience, a team may be sabotaging its goal. An additional consideration about 
punishment is the message it sends: that these are acceptable ways to interact Children often imitate other people's 
behaviors. It's important that we behave towards them as we want them to behave toward others. 

DEVELOPING A TOILET TRAINING ROUTINE 

Toilet training follows this general sequence. First, a child's bodily maturity and regularity indicate readiness for 
toilet training. Then, other people begin anticipating the child's need to go at predictable times, and schedule train. 
Finally, the child learns to recognize the voiding urge, and responds appropriately by going to the toilet or asking to go. 

Determine readiness 

"Is my child ready to be toilet trained?" Readiness can be assessed in several ways. A child's body must be mature 
enough for toilet training. Physical maturity for training readiness typically occurs in nondisabled children between 1 8 
and 30 months. Determine maturity by observing the child's behavior. Behavioral indicators for bowel training include 
regularity in bowel movements and no accidents while the child sleeps. Readiness for bladder training is indicated 
when the child remains dry during naps and regularly stays dry for 1 .5-2 hours. Initial training with a nondisabled child 
may take from 5-10 months. These and other toileting norms such as a child's awareness of the need to go, the 
motivation to become toilet trained, and so forth; can only be suggested by age ranges. The order in which some norms 
are demonstrated (Chart 1) may also vary from one child to another. Children mature at different rates. In addition, 
a child may experience setbacks due to circumstances such as an illness, changes in daily routines or a new sibling at home. 

13 













Chart 1 - General Toileting Norms 

Sphincter and bladder control generally follow this sequence: control of bowels while asleep, control of 
bowels during waking hours, control of bladder while awake, and finally, bladder control at night. 

A child who has regularity with bowel movements and no accidents while asleep may be ready for bowel 
training. 

A child who remains dry during naps and regularly stays dry for 1 .5-2 hours may be ready for bladder 
training. 

A child's age of training readiness may range from 18-30 months. 

Initial training may take from 5-10 months depending upon the child's physical maturation and motivation. 

It is not uncommon for children to experience setback or regression during illness, major changes in their 
daily routines, when starting school or getting a new sibling. 

Some children may not become completely trained in the daytime until age 5, or at night before age 7. 

Girls learn faster and earlier than boys. 

Children become aware first of having eliminated, then that they are in the process of voiding, and finally 
recognizing the voiding urge before going. 



Another indicator of readiness is the willingness and ability of parents and school staff to invest time and energy into 
toilet training their child. Since successful implementation of a toilet training program requires consistency and coop- 
eration between home and school, everyone on the team must be committed to this effort. 

Also, remember that the toileting "experts" don't always agree about a child's readiness. Find out about past toilet 
training efforts. What was successful and where were the problems? After soliciting and considering the input of all its 
members, your child's educational team can make an "expert" decision about whether to begin. 

Even if the team decides to postpone toilet training, many of the skills needed during toileting, can start to be 
worked on in a diaper changing routine. Every activity in which your child participates should be seen as a teaching and 
learning opportunity for building useful concepts and important skills related to toileting. Learning concepts such as 
"wet" or "dry," participating in dressing activities, asking for assistance, learning routes and independent travel skills, 
and so forth can be worked on throughout the day in a variety of activities. 

Gather data 

After deciding to begin toilet training, find out when your child is wet and/or dirty and dry. A frequent diaper or 
training pants check (every half hour, or more often if needed) for at least 14 days will be necessary to identify a pattern 
of elimination. Factors such as amount of liquid intake, illness, sleep and routines can affect regularity. Look for special 
behaviors your child might demonstrate immediately before urinating or having a bowel movement Share this informa- 
tion with other team members. Collecting information requires time and effort, but it will save time in the long run. 
Since a 70% success rate is necessary for learning, it's important to identify times in a day when a child most likely 
needs to "go," and target those times for toilet training. While children often have bowel control before bladder 
control, bladder training is usually worked on first because there are more opportunities in a day to be successful. 

Using a data collection method such as the one shown in Chart 2 can be very helpful. This baseline information will 
also help your team determine how well its toilet training program is working. Compare it with data that's regularly 
collected after toilet training has begun. 

14 



Key: 



Chart 2 - Toileting Data Collection Chart 

UT- urinated in toilet UO - urinated off toilet 

BT - b.m. in toilet BO - b.m. off toilet N - on toilet, did nothing 



Tune 
A P 




Week of 








Week of 
















Mon 


Tues 


Wed 


Thur 


Fri 


Sat 


Sun 


Mon 


Tues 


Wed 


Thur 


Fri 


Sat 


Sun 


12 






























12:30 






























1 






























1:30 






























2 






























2:30 






























3 






























3:30 






























! 4 






























4:30 






























5 






























5:30 






























6 






























6:30 






























7 






























7:30 






























8 






























8:30 






























9 






























9:30 






























10 






























10:30 






























11 






























11:30 































3 



s 







15 



Assess your child's toileting abilities 

Clarify the sequence of steps a nondisabled person follows when using the toilet. Informally assess your child's 
ability to complete each of those steps. Identify steps that are completed independently, then distinguish between steps 
that can be taught without additional changes and those requiring adaptations. 

Select objectives 

Every child has unique learning needs, specified in an IEP as goals and objectives. Although they are artificially 
separated in the IEP, many skills are often used together to complete an activity. When developing a toilet training 
program, it's important to remember that voiding in the toilet is only one of several interrelated skills needed to com- 
plete this activity. Knowing where the bathroom is and how to get there, undressing and dressing, getting on and off the 
commode, and requesting assistance are examples of orientation and mobility, self help, motor and communication 
skills that contribute to successful toileting. Select 2 or 3 objective-based skills from the IEP that are necessary or 
helpful in teaching those steps, and can be naturally incorporated into the routine sequence. 

Identify adaptations 

Identify the adaptations that will be needed to support your child's completion of steps in the sequence more 
independently, such as a calendar system to schedule and communicate toileting time, or pants with an elastic waist- 
band for an older student who cannot zip or snap. Since it's not possible for a small child to struggle at maintaining 
balance on the commode while at the same time relaxing to use the toilet, consult with your OT or PT to see if adaptive 
seating is needed. Consider your child's size and dimensions when deciding the specific seating requirements (Chart 3). 



Chart 3 - Seating Guidelines 

Goals 

Child should be comfortable, balanced and secure. 

Child should use a minimum of conscious effort and physical energy to stay seated. 

Principles 

Pelvis should be stable and in a neutral position, with body weight evenly distributed across buttocks and 
thighs (hips and knees flexed at 90 degrees). 

Trunk should be symmetrical and in midline. 

Feet should be supported on floor or stool (ankles at 90 degrees). 

Head should be in line with trunk and in a neutral position. 

Forearms can rest at elbow height. 

Proper Measurements for Chair or "Potty Seat" 

Seat depth - length of child's thighs (distance from above knees to buttocks). 

Height of chair seat - length of child's shins (distance from just below knees to heels/soles of feet). 

Chair back - length of child's back (tailbone to shoulder girdle). 



Consider appropriate teaching strategies 

Because your child may have acquired some skills and not others, the support that is needed could change from 
one routine step to the next. We often, however, give our children the same level of support throughout an activity, 
regardless of their ability to complete some steps with more independence. Consequently, they may become prompt 

16 



dependent by learning to wait for our prompts before beginning or continuing a sequence. To prevent this from 
happening, keep an array of teaching strategies in mind when designing a toileting routine. Incorporate the approaches 
that are most helpful into the routine you use for instructing your child. Examples of strategies include: 

• The hierarchy of prompts - from least intrusive (object needed in routine, picture, point, sign, etc.) to most 
intrusive (hand-over-hand, hand-under-hand, physical prompt, etc.); 

• The progression with which prompts are given - independent attempts followed by increasing adult support 

(least intrusive to most intrusive), or intensive support provided initially, then faded (most to least); 

• The timing with which prompts are given - immediate redirection to minimize potential distractions and 

maintain focus on the sequence, or "wait time" to encourage self-initiation and acknowledge the need for 
processing. 

Since our children (like us) have "good days" and "bad days," additional support may sometimes be needed to 
help them successfully complete steps that are completed independently at other times. We must be attentive to their 
changing abilities and needs, and provide the support that is necessary at each moment. 

Put it all together 

Write a toileting sequence for your child that incorporates any necessary adaptations the team has identified. 
Teaching strategies should also be reflected in the sequence steps and/or noted somewhere on the plan. Be sure the 
team agrees to a procedure that can be followed at both school and home. Consistency is essential. Plan with your 
child's safety, security, self-respect and eventual independence as overall goals. 

To begin, choose the two times each day, at home and school, that you have found your child to be most regular. 
Don't be discouraged by the lack of immediate results. After the toileting routine is consistently followed for a while, 
your child will begin to anticipate the sequence steps. Expectation leads to participation. (If, however, your child still 
isn't having success, review the routine sequence and consider making changes.) Be prepared to give immediate 
reward and praise for successful toileting. Select a reinforcement that is truly rewarding yet can be gradually faded 
over time. One child might enjoy flushing the toilet while another appreciates the overhead light flashing on and off. Do 
not punish for accidents, though participation in cleanup is okay. Continue collecting data to monitor your child's 
progress and the program's effectiveness. Gradually increase the number of daily toileting sessions, and generalize the 
routine into other places. 

While developing a toilet training procedure that works on current needs, you should keep long-range expectations 
in mind. For example, if requesting to use the bathroom is an eventual objective, identify a way the toileting routine can 
be communicated by adults, with a sign, picture, gesture, physical prompt, or toilet paper roll. After learning that going 
to the toilet always follows this communication, the student can then be given opportunities to request the activity. 

PROBLEM SOLVING 

For solutions to some common problems experienced in toilet training, try the tips suggested below. 

Problem: My child refuses to enter the bathroom, sit or stay long enough on the toilet (5- 10 minutes). 

Tips: Familiarize your child with the bathroom and toilet Getting into the bathroom or briefly sitting on the toilet 
should be the first toilet training goal. Reward the smallest step toward that goal. Try to increase your child's perfor- 
mance each successive trip. Provide plenty of opportunities for practice every day. Be sure your child is well posi- 
tioned, comfortable and secure on the toilet. 

Problem: My child does not urinate often or becomes constipated. 

17 



o 

s 







9f 



i 



Tips: Give your child plenty of fluids. Salty snacks, exercise and other physical activity sometimes help encourage 
fluid intake. Swimming is another good choice, as some children manage to drink quite a bit while getting a workout. 
Motor therapy programs and exercise can also increase your child's ability to push during a bowel movement. 

For constipation problems, increase fluids and add more fiber to the child's diet. Fruits, except for bananas and 
apples, have a laxative effect. The following recipe was recommended by a family in Exceptional Parent magazine: 
combine 1/4 cup bran, 1 cup prune juice and 1 cup apple sauce. Mix well. Keep refrigerated. They gave their 
daughter 3 tablespoons of the mixture with breakfast and dinner, and also used an over-the-counter stool softener. 
Consult a doctor if the condition is chronic, or the child has frequent diarrhea. Doctors can rule out structural problems 
or blockages, and prescribe stool softeners or diet modifications. 

Some children intentionally hold bowel movements because elimination is painful (i.e. a crack or fissure around the 
anus). Increasing fluid intake and using stool softeners may help. If your child is obviously experiencing pain, consult a doctor. 
Some medications have side effects that include constipation and the frequent urge to urinate. Consult with a doctor to 
determine if your child's toileting is affected by medication. Finally, some children withhold urine or bowel movements 
in reaction to trauma, or in response to punishing toilet training programs, behavior programs or environments. They 
may try to oppose control through counter control efforts such as refusing to do what is expected. Even though an 
adult can force a child to sit on the toilet, it is impossible to make him or her use it. The long-term solution is to establish 
or reestablish an interactional bond. A positive relationship between the adult and child encourages cooperation. 
Giving the child positive ways to exercise control through choice making also builds trust and reduce power struggles. 
Adults who are warm, accepting and gentle will provide the type of atmosphere that motivates a child to learn. 

Problem: My child does not relax on the toilet. 

Tips: First make sure your child is positioned correctly on the toilet (See Chart 3.) Interrupt and redirect a very 
active child to an alternative, more calming form of play or activity. There is disagreement about whether children 
should be allowed to "play" in the bathroom. The "no play" advice is to keep a child focused on the bathroom's 
primary purpose. Some children, however, may need a positive way to structure their "activity" of sitting on the toilet 
Remove temptations like toilet paper rolls. Have pre-planned activities available for times when the child might "get 
into trouble." Prevent problems. Provide close supervision and instruction, to teach the child what is permitted. 

Problem: My child does not initiate toileting, but uses the toilet when taken by an adult. 

Tips: Your child's awareness of a full bladder or bowel is the best cue for self-initiated toileting. Some children 
become too engrossed in activities to notice. Others may lack the cognitive ability to recognize the voiding urge. 
Sometimes, when adults provide faulty instruction by not fading the use of prompts, their children become dependant 
on them to initiate the toileting activity. Encourage self-initiated toileting by gradually fading any necessary prompts. By 
teaching a child to use the bathroom after specific activities, those activities can become the reminders to go. Putting 
communicative reminders, such as pictures or object cues, in a child's daily schedule or environment may also help. 

Problem: My child is making no progress, doesn't seem to understand the toilet's purpose, is not bothered by 
being wet and has frequent accidents. 

Tips: Take a break. Perseverance is necessary for teaching, but so is our responsiveness to feedback. The 
teaching sequence may not be appropriate or your child may not be motivated enough to succeed. Reassess the 
program and make adjustments. Whether you decide to continue toilet training or postpone it for now, always try to 
use an age-appropriate alternative to diapers, such as "Pull-Ups" or "Depends". 

Children at a sufficiendy high cognitive and communicative level might understand picture, photograph or book 
explanations. Direct experience is the only option for children with more basic communication and cognition. They 

18 



might, however, be able to observe other children or family members model appropriate toileting behavior. Always 
change clothes in the bathroom after an accident Deposit any "products" in the toilet. 

A child may be making too many toileting mistakes, both accidents and instances when nothing happens on the 
toilet. Reduce the frequency of toileting visits, and determine if there is some pattern by keeping track of all elimina- 
tions. Watch for recognizable indications that the child is urinating or having a bowel movement 

As much as possible, maintain a regular routine or schedule with your child, especially with meals and snack times. 
Regulate and monitor what is given to eat and drink. 



BOOK AND JOURNAL RESOURCES 

Azrin, Nathan & Foxx, R. Toilet Train in Less than a Day, Pocket Books, New York, 1976. 

Bettison, S. (1986). "Behavioral Approaches to Toilet Training for Retarded Persons," International 
Review of Research in Mental Retardation, 14, 319 - 350. 

Cole, Joanna. Parents Book of Toilet Training, Parents Magazine Press, New York, 1983. 

Fredericks, H.D. Bud, et al. Toilet Training the Child with Handicaps, 5th Edition, Teaching Research, 
Monmouth, Oregon, 1985. 

Finnie, Nancy R. Handling the Young Cerebral Palsied Child at Home, E.P. Dutton, 1974. 



"0 

9) 



s 



TOILETING EQUIPMENT RESOURCES 

Flaghouse Inc. 

150 N. MacQuestion Pkwy. 

Mt. Vernon, NY 10550 

(800)221-5185 

Gunnen 

221 N. Water Street 

Vassar, Ml 48768 

(800)551-0055 



J.A. Preston 
60 Page Road 
Clifton, NJ 07012 
(800)631-7277 

Rifton Equipment for the Handicapped 
Route 213 
Rifton, NY 12471 
(914)658-3141 







Minimal Losses...Major Implications 

By Jenny Lace, Teacher Trainer, TSBVI, Texas Deafblind Outreach 

Webster's dictionary defines minimal as "the least possible degree or quantity." Unfortunately this can imply that 
something is without consequence, insignificant, or requiring the least possible intervention. When it comes to vision 
and hearing losses this could not be further from the truth. 

A dual sensory loss effects incidental learning. This is the learning that takes place just because you happened to see 
or hear something while you're hanging out, the way most of us learn most things. The problem with most incidental 
learning is that you can only learn what you can see or hear. 






If you have a vision and hearing loss incidental learning is tremendously reduced. What happens when it is a peer's 
turn to read in a typical classroom, if you can' t quite see him and you also can't quite hear him? You miss out on most 

19 






of what he reads, comments he makes about what he read, and perhaps the feedback from the teacher and other 
students. When class discussions are out of sight and/or hearing range, the student with mild hearing and vision losses 
may spend more time daydreaming. 

A common question that is asked is, " Won't the student let the teacher know if he can't hear or see clearly?" The 
answer is usually, "NO!" As Dr. Seuss might say: 



o 








You don't hear what you don't hear 

And you don't know what you didn't hear. ... 

You don't see what you don't see 

And you don ' t know what you didn' t see ! 

Do you know that a student can be on the deafblind census if he has documented hearing and visual losses that are 
minimal or mild? Even though these losses may not meet the requirements for auditory impairment or visual impairment 
if considered individually, if the combination of the losses adversely affects the student's education performance , they 
could be included on the deafblind census. When would that occur? 

PROBLEMS OCCURRING WITH A MILD VISUAL IMPAIRMENT 

A mild visual impairment is not easy to quantify. We generally think of someone with a visual acuity of 20/60 - 20/ 
1 00 as mildly visually impaired However, someone with Retinitis Pigmentosa might have 20/20 vision and better than 
30 degrees of field vision and not qualify for vision services. This student would probably do fine visually. That is until 
the lights dimmed and the overhead went on or until they came inside from the bright sunlight into a dark hallway. Then 
they would experience visual impairment that was fairly significant for a time. Another scenario would be the student 
who had vision only in one eye. Normally that wouldn't be a problem, but if he also had a hearing loss in one ear on the 
same side as the vision loss, sound localization would be hard, and travel safety might be impacted. Making a call on 
the impact of the vision impairment has a lot to do with how the child functionally uses his vision to do educational tasks. 
If a child is experiencing educational difficulties that appear to be related to problems with his vision, he should be seen 
by an ophthalmologist and possibly referred to the vision teacher for a functional vision evaluation and learning media 
assessment. If the child has a hearing loss, even a minimal one, and is experiencing difficulty in school, we would 
encourage the school to complete a functional vision evaluation and learning media assessment There may be a need 
to make some specific modifications in programming or materials, even if the child does not need direct vision services. 
Part of the reason we say this has to do with the impact of the hearing loss. Please read on. 

PROBLEMS OCCURRING FROM A MINIMAL OR MILD HEARING LOSS 

A minimal or mild hearing loss would fall into the range of 1 6-40 dB. Even without a vision loss, a slight hearing loss 
can cause a number of significant problems, especially in an educational setting: 

• Problems hearing faint or distant speech 

• Problems hearing subtle conversational cues 

• Problems tracking fast paced conversations 

• Problems hearing the word-sound distinctions 

What kind of impact might this have on the mildly hearing impaired student who has a vision loss in a typical 
classroom? 



Trouble hearing faint or distant speech 

If a student has trouble hearing faint or distant speech, more than 25% of classroom instruction could be missed. 

20 



(Flexer, 1997) Add a vision loss and imagine the percent of missed instruction that would likely occur. The child with 
a mild vision impairment and mild hearing loss probably relies on the information he can pick up from watching the 
speaker's lips to confirm what he thinks he is hearing. This is especially true if he is not using a hearing aid. Distance 
is his enemy for both his vision and his hearing. 

Missing subtle conversational cues 

Students with minimal or mild hearing losses often miss subtle conversational cues that cause them to respond 
inappropriately. They may appear immature and be more fatigued than peers with normal hearing because of the extra 
effort they make to hear. (Flexer, 1997) Students with mild vision and hearing loss miss out on this information, too. 
They also experience added stress and may appear socially immature. Not only can they miss auditory information; 
they may also miss additional conversational cues of a visual nature such as facial expression or gestures because of the 
vision problems. On top of that, their ability to use speechreading to support what they are hearing is impaired in many 
instances because of the vision problems. 

Problems following classroom discussions 

Another issue for the student with any type of vision and hearing loss is trying to follow a fast-paced conversation of 
a typical classroom discussion. About the time you locate the speaker and get focused auditorily and visually, he is no 
longer speaking and the girl behind you has the floor. You shift around to see her face, which you can actually see pretty 
well and you can also hear her pretty well. After about five seconds the teacher, who has moved to the window aisle, 
responds. She happens to be in front of the window with the sun coming in and beside the rattling air conditioner. After 
about twenty minutes of this activity imagine the impact on the student's attention and behavior. This also has great 
impact on his ability to participate in many types of social and extracurricular activities. 

Misses morphological markers for plurality, tense, possessiveness 

Try a little experiment. Put some earplugs in your ears. Have a friend stand across the room and in a quiet 
conversational voice say a series of words like, "hit, hitting, hits, rat, ram, dogs, dog's, dog, see, sees, seen." Did you 
hear all the different final sounds or did the words mostly sound the same? Now try it again, only this time, have a 
television or radio playing in the background. How did that work? Now do it without looking at his face. Next, add 
another friend across the room taking turns with the first speaker reciting a different series of words. What happens 
then? Chances are you could not tell exactly what words were being said with any accuracy. Imagine your entire day 
being like this. Do you think the student dealing with these conditions would be more fatigued and/or frustrated than the 
average bearing/sighted student? How would this impact his ability to get the information being presented? 

MILD LOSSES EQUAL MAJOR PROBLEMS IN A TYPICAL CLASSROOM 

Speech-to-noise ratio 

The American Speech-Language-Hearing Association (ASH A) gives the following guidelines: ambient noise 
should be no louder than 30-35 dB A in an empty room; reverberation time should not exceed .4 seconds; Signal-to- 
Noise (S/N) ratios should be no lower than +15dB. Yet research has repeatedly found: the average unoccupied 
classroom (no children) noise levels are 41-50 dB A; the average reverberation times are .52 seconds; S/N ratios are 
only 44 dB, and may be worse than dB. (Crandall and Smaldino, 1994) 

Vision and hearing losses, even very mild ones, when combined can create some major problems. If you have a 
mild hearing loss you may not always function as if you have a mild hearing loss. How your hearing functions depends 
on the situation and the signal to noise ratio (S/N). We all have had the experience of being able to hear something 
without being able to understand what is being said. Think of the drive-thru at MacDonald's or Jack-in-the-Box, a 
busy gate at the airport, or a noisy restaurant Your ability to hear has little to do with how loud something is said, but 
rather how loud it is compared to everything else is in the environment around you. 

21 



Adults with normal hearing sensitivity and language abilities don'tneed as high of a S/N ratio as children. Typical 
adults need speech to be twice the sound pressure level of the background noise. (Flexer, 1997) Typical children need 
better speech-to-noise ratio than an adult to hear and develop the crucial word/sound distinctions of language. 
(Flexer, 1994) Persons with any kind of hearing loss need an even more favorable S/N (even when wearing hearing 
aids). Speech needs to be at least 10 times the level of background noise for them. (Flexer, 1997) If you factor in 
noise, reverberation, and frequent changes in teacher and pupil locations in the average classroom, the typical speech 
to noise ratio is less than ideal even for the child with normal hearing. 

While we are mentioning reverberation or echo, did you know that longer reverberation times reduce the signal-to- 
noise ratio? (Scott, 1997) Reverberation time increases with high ceilings, bare walls, and hard-surfaced, uncarpeted 
floors. Think about the design of most classrooms, especially in older buildings. 

Busy visual environments 

Although there is not an equivalent vision-clutter ratio, there is a similar phenomenon that occurs. You know it 
well, too. Think about the last time you were in an unfamiliar store trying to find a specific item or the last time you 
had to find a friend in a crowded room. Figuring out where and what to look at is tricky. If there is a lot going on 
visually and you can't see anything very clearly, do you find yourself getting frustrated or feeling overwhelmed? 
Now look at the typical classroom. Is it a busy place visually with lots of clutter and competing visual demands? 

Let's move that child up front 

A typical remedy for a child who does not hear very well and does not see very well is to move him up front, so he 
will be closer to the teacher. She is the learning signal we most want him to pick up, right? Well, not necessarily, not 
in a group discussion. This solution also assumes that the teacher is nailed to the floor in front of the child. How many 
teachers do you know who teach that way? Besides all of that, you are required to periodically look at your book, a 
handout, and the overhead or map. Preferential seating is a less-than-perfect solution for this child. 

PROBLEMS AND SOLUTIONS 

Helping the child with combined mild or minimal hearing and vision loss 

There are several things that should be considered for this child. First of all, has appropriate assessment been done 
to determine the impact of the vision and hearing loss on education? Even if the ophthalmological and otological 
evaluations from the doctors do not qualify them as visually impaired or hearing impaired under SBOE definitions, 
education may still be impacted. A functional vision evaluation should be done. Specific hearing assessment related to 
listening in differing environments may also be helpful in evaluating hearing functioning for educational purposes. 

Making simple and appropriate modifications to the classroom can also make a huge difference. Acoustic modifi- 
cations can be as simple as: 

• installing carpet; 

• putting rubber tips or tennis balls on desk/table/chair legs; 

• installing curtains; 

• installing acoustical ceiling tiles; 

• maintaining ventilation systems, doors, lighting, and windows. 

Additionally, a Sound-Field FM System allows for the control of the acoustic environment facilitating accessibility 
of teacher instruction for ALL children in the classroom. An assistive listening device may also be appropriate. Those 
students who do not qualify for special education due to a minimal hearing loss or because they have not failed enough 
may be able to qualify for S/N ratio enhancing technology through Section 504 of IDEA using "Acoustic Accessibility." 

22 



Family and Professional Training Needs Survey 



Parent/Family Member 

Professional 

1 . What training have you and/or your family (excluding 
your child with disabilities) had the OPPORTUNITY to 
participate in during 1999-2000? 



family retreats 

local/regional workshops 

statewide conferences (list: 

national conferences (list: _ 



J 



J 



information from the Internet 

information from printed materials such as newsletters, 

articles, books etc. 

parent/family support groups 

individual consultation at home by (circle those that apply: 

local school staff, regional vi staff, TSBVI Outreach) 
" individual consultation at school by (circle those that apply: 

local school staff, regional vi staff, TSBVI Outreach) 

chatrooms/listservs 

email 

other: 

2. Of the training opportunities you had available, which 
ones did you take advantage of during 1999-2000? 



family retreats 

local/regional workshops 

statewide conferences (list: 

national conferences (list: _ 



J 



J 



information from the Internet 

information from printed materials such as newsletters, 

articles, books etc. 

parent/family support groups 

individual consultation at home by (circle those that apply: 

local school staff, regional vi staff, TSBVI Outreach) 
individual consultation at school by (circle those that apply: 

local school staff, regional vi staff, TSBVI Outreach) 

chatrooms/listservs 

email 

other: 

3. What topics do you need more information about? 

Advocacy, for example 

Special education law, for example 

Disability, for example 



Educational programming issues, 

for example 



Independent living, for example _ 

Impact of disability on my family, 

for example 



Sexuality issues, for example 

Medical issues, for example 

Technology issues, for example 

Resources, for example 



4. What formats for training do you prefer? 

Face-to-face workshops locally or regionally 

Distance education workshops (e.g. videoconferencing, 

web-based) 

Large state or national conferences 

Family retreats 

Internet information 

Videotapes 

Articles to read ' 

Newsletters 

Support groups 

Informational fairs/exhibits 

Individual consultation at home 

Individual consultation at school 

Chat rooms/listservs 

Email 

_ Other? 

5. What obstacles do you face in getting training or 
information? 

Time away from my family 

Release time from work 

Cost of travel to training 

Cost of registration 

Child Care while in training 

Computer/Internet access 

Access to videotape/audiotape/DVD player 

Location too far away 

Times that training is offered 

Length of training 

Language barriers 

Topics of training 

Awareness of when/where training is being offered 

Other 



6. Thinking about the issues you checked in #5, what 
would make access to training and information more 
accessible for you? 



7. Other comments about training? 






8. Regarding SEE/HEAR newsletter, what articles or types of articles have you found particularly helpful? 



9. What kinds of articles or what topics would you like to see included in SEE/HEAR? 



10. Would you be willing to write an article for SEE/HEAR or do you have an idea for an article you would like to 
see written? If so, what would it be about? How can we contact you? 



1 1 . If you could make one change to SEE/HEAR, what would that change be? 



1 2. If you are currently receiving SEE/HEAR in a format other than regular print English, do you have comments 
about the quality or need for these additional formats? 



Place 

Stamp 

Here 



Texas School for the Blind & Visually Impaired 

Outreach Department 

1100 West 45 th Street 

Austin, TX 78756 

Attention: Kate Moss, SEE/HEAR Editor 



In addressing mild visual impairments there are also some simple modifications: 

• Additional time with "hands on" exploration in order to internalize what others grasp incidentally; 

• Reduced visual clutter; 

• Low vision devices; 

• Eccentric and varied viewing positions and seating positions; 

• Improved lighting and glare control; 

• Reduced use of overheads and chalkboards unless the student has the information on paper in front of him; 

• Additional staff to assist with accessing information in group settings; 

• Use of strategies such as a talking stick or raised hands to control the pace of group discussions and to provide 
more clues to who is speaking. 

CONCLUSION 

The needs of the child with minimal or mild combined vision and hearing loss can be major. Too often, these 
children must fail to have the support and modifications they need in educational settings. Many of the things we can do 
to improve the classroom for these children will also improve the classroom for the other students as well. It is 
important not to let these children fall through the cracks and miss out on the education they need. They are just too 
valuable to our future to overlook their needs. 

REFERENCES 

Biehl, Jane: I Am Hard of Hearing, But I Can See Fine. . . Coping with Hearing and Vision Loss. Hearing 
Loss, July/August, 1996. 

Crandell, Carl: Classroom Acoustics: A Failing Grade. Hearing Health, September/October 1998. 

Crandall, C. C. and Smaldino, J.J. 1994. An Update of Classroom Acoustics for Children with Hearing 
Impairment, The Volta Review, Vol. 96, Issue 4, page 29 1 . 

Dancer, Jess: Effects of Unilateral Hearing Loss on Teacher Responses to the SIFTER. American Annals 
of the Deaf, Volume 140, No. 3. 

Flexer, Carol: Classroom Management of Children with Minimal Hearing Loss. The Hearing Journal, 
September 1995; Volume 48, No. 9. 

Flexer, Carol: Commonly- Asked Questions about Children with Minimal Hearing Loss in the Classroom. 
Hearing Loss January/February 1997. 

Flexer, Carol: Facilitating Hearing and Listening in Young Children. Singular Publishing Group, Inc. 
San Diego, CA, 1994. 

Hilt, Gary: Testing for Hearing Loss in Children. Exceptional Parent, May 1998. 

Oyler, Robert, Oyler, Anne, Matkin, Noel: Unilateral Hearing Loss: Demographic and Educational 
Impact. American Speech-Language Hearing Association, 1988. 

Scott, Abigail: Sound Solutions in the Classroom. ADVANCE for Speech-Language Pathologists and 
Audiologists, December 1997. 

Swift, Billie: Scott Haug Foundation Helps Amplify Austin Classrooms. The Hearing Review, October 
1998. 

23 



The Thread: To Socialize or Not to Socialize 

By Sheryl Burgstahler, DO-IT Director 
Reprinted with permission from DO- IT Newsletter, Volume 8, Number 1 

Editor's Note: If you would like more information about Disabilities, Opportunities, Internetworking, and 
Technology (DO IT) contact them at: DOIT, University of Washington, Box 354842, Seattle, WA 98195-4842, 
phone - (206) 685-DOIT (voice/TTY), or visit the website at <http://www.washington.edu/doit>. 










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A while back DO-IT Scholars, Pals, and Mentors addressed the following questions in an active discussion on the 
Internet. 

1 . What does it mean to you to have a "successful social life"? 

2. Why is it (or is it not) important to develop a successful social life in college? 

3. What are strategies for developing a fulfilling social life in college? 

Below are some of the responses. 

• As far as social life, I can't stress enough the importance of at least trying to get out and be involved. It 
really doesn't matter in what - clubs, teams, friends, whatever... It won't be easy. .but it's worth it... 

• Social life in college is imperative for your own sanity and for learning how to interact with people. In many 
cases, people make lasting friendships in college. 

• ...those that come out of college without social interaction will have trouble. We live and work in a world 
where groups of people solve problems - especially in the areas of science, math, and engineering. There- 
fore, these people coming out of college will have trouble succeeding because they do not have the higher 
social skills required in this situation. Yes, you learn academically in college, however, the social skills learned 
are more important.. 

• I found people to be a lot more open in college than in high school, and I learned about socializing with 
others in college, and am still learning in graduate school. In college, I made most of my friends in classes, in 
the dining hall, at the foreign language table, and at the Lutheran Ministry at my university. I am still in touch 
with several people I met during my college years. 

• I think r ve learned from being with people, too. Mostly it's made being with people much easier for me. 
I'm not so self-conscious or uncertain of myself. Friends have also reintroduced me to things like crayons 
and taught me card games and so on. Not only is it fun to hang out with people, but it's emotionally uplifting. 
Life wouldn't be as worthwhile without friends. 

• I think college consists of both social and academic learning. As I look back on my undergraduate days, I 
remember a lot more social times with other people than I do lectures or exams. And I'm not really a 
people-person, either. I know I learned a lot from the social end of things. Some of that learning was painful, 
because when you make friends, people sometimes give feedback which you need but wouldn't otherwise 
get about behavior and attitude. This is part of people relating to one another, and causes necessary growth. 
Mosdy though, socializing is fun, and being by yourself is lonely. 

• College teaches you many things if it works right How to interact with many people in many different ways 
and on many different levels, but it also gives you information and hopefully enhances problem-solving and 
thinking for yourself skills. 

• In college one has the challenge of balancing academic demands with social pleasures. That is something 
that will be important later on, too. 

24 



• I believe that this type of socialization turns out professional associations that last. Now that I am a comput- 
ing professional, these relations continue. We have careers in common, and I rely on others to give me 
important information. My friends also rely on me to feed them information. 

• In many cases for blind people socializing is the key to academics. . .we need sighteds that are part of the 
class, in the same section of the book, listening to the same lectures, doing the same homework, to help us 
with them. With their help we can get the descriptions we need. Therefore, socializing is, as I have said, 
imperative. Academics is the road we use to get there. After academics or dorm life, we can branch out into 
wider social circles. It is a progression. 

• Having a successful social life will make your college career easier for many reasons. First, with a social life, 
a person does not feel lonely because you have friends to talk to and listen to. Secondly, you can get help 
from your friends if you need help. For example, you can study those killer midterms with friends ! Third, a 
person would have more chances to form a relationship which we believe is important to people. Fourth, it 
will make you a "well-rounded" person and most companies will look for that when you look for a job. 

• I have seen people who had a good social life in life and college. This is a key skill that you need to learn in 
college. In your professional career, you need to do this with your career and family. 

• In college and "real" life you need a lot of support to even survive on your own. 

• My social contacts came from communities of shared interest Pretty much any religious or political interest, 
extracurricular activity or hobby can work if you use it. For me, the debate team and the foreign language 
house provided communities where I felt accepted and had a good time. 

• The interest... allows me to escape my label. I guess you get a chance to know a person spiritually first... 

• Living in the dorms helped immensely in immersing me in the college social life. Without the contact in the 
dining halls, my social life would only have been half as good at best. 

• My social life revolves mostly around people on my floor or in the NASA program. I'm in Intervarsity 
Christian fellowship, too, and know people in it, but I got involved in that through people on my floor last year. 

• A lot of my social life surrounded my career goals. I wanted to be a programmer and hung around the 
computer lab - not exactly beer and pizza, but it was very social. I think I learned more from the other 
students than from my professors. There was great interaction and sharing of ideas and concepts. 

• There are many strategies to fulfilling social life in college. A popular way is to join a fraternity or sorority on 
campus. Through this, you can get a lot of friends from your house. Second way is to join a club that 
matches your interest I prefer this way because it matches your interests with other people. I have a lot of 
friends by joining a club. Third way, similar to joining a fraternity, is to live in a dorm. This is a good way for 
people who don't want to join a frat 

• Socializing that is connected to your schoolwork is very valuable, too. I made one good friend in college in 
a class we were taking together. Every week, we got together and worked on the homework together. The 
best part was that we were able to help each other, so that it was not one-sided. During my first year as a 
graduate student I also frequently discussed problem sets with my classmates. This gave me good experi- 
ence for collaborating with others on research. 

• You just need to smile at people and look receptive. You should take some time to go to a common place in 
your dorm and talk to the people there. 

• I think that blind people face the particular challenge of not being able to walk up to someone with whom 
they would like to talk unless they hear their voice or the person introduces him or herself. In the dining hall, 
for example, I always asked someone to help me find a seat, but that person would not necessarily know the 
people I liked to sit with, so it was a game of chance. Sometimes I met people, sometimes I happened to sit 

25 



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next to gocxi friends, and sometimes I was unable to join in the conversations around me. However, by 
making friends in certain interest groups and arranging to meet friends for a meal, I was able to keep in touch 
with the people I cared about. 

I understand that for some people making friends is not that easy as it is for others. But if you would treat 
people in a friendly manner, they are going to treat you the same. Whereas, if you feel yourself so different 
from others and would not talk to them then you will find yourself totally out of place. Everyone is the same 
and different, too. This is what is so good about the world. 



Texas Deafblind Census 2000 

By Kate Moss, Family Support Specialist, Texas Deafblind Outreach 



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The 2000 Texas Deafblind Census has been compiled. Dr. Roseanna Davidson, Director of Deafblind Census 
Project at Texas Tech University in Lubbock has worked with the Regional Deafblind Specialists in each of the twenty 
Education Service Centers to collect and verify this data before submitting it to the Federal Census Project Some of 
the ESC regions have piloted a process of collecting, verifying, and analyzing the data in an effort to develop a census 
collection process to make sure we know all of the children with deafblindness in Texas. Based on the Federal 
Projection of Number of Students with Deafblindness, a number derived by taking a percentage of all students receiv- 
ing special education service, there should be between 920-1380 school-aged children (birth to twenty-two) who 
would be eligible as deafblind for educational purposes. The actual number reported on the 2000 Texas census is 
much lower than that, only 607 below the age of 22. One of our concerns continues to be the children who should be 
identified as deafblind and receive specialized supports and educational modifications not being identified. Addition- 
ally, many of the children on the census have vision and hearing loss that is suspected, but not adequately assessed. 
With the new Deafblind Specialists at the education service centers, our hope is these children with be found if they are 
out there. Here are a few basic facts from the 2000 Texas Deafblind Census. 



Ages 

1 yr. - 9 

2 yr. - 19 
3yr. -21 

4 yr. - 29 

5 yr. - 27 

6 yr. - 29 

7 yr. - 32 

8 yr. - 34 

9 yr. - 37 

10 yr. - 34 

11 yr. -35 

12 yr. -45 

1 3 yr. - 3 1 
14yr.-39 

15 yr. - 32 

16 yr. -27 

17 yr. -29 

18 yr. -31 

19 yr. - 28 

20 yr. - 22 
21yr.-17 



Top Fifteen Etiologies 

Prematurity- 100 

Microcephaly - 30 

CHARGE -29 

Menengitis - 27 

Cytomegalovirus - 26 

Usher Type 1 - 23 

Hydrocephaly - 20 

Congenital Rubella Syndrome - 18 

Down Syndrome - 13 

Usher Type 2- 12 

Head Injury- 12 

Asphyxia - 1 1 

Leber's Congenital Amaurosis - 10 

Tumors - 7 

Cornelia de Lange Syndrome - 6 

Gender 

Males - 344 
Females - 263 



26 



Vision Status 

Better than 20/70 better eye to 20/200 - 1 19 

Legally Blind (20/200 or less than 20 degree fields) -291 

Light Perception only - 47 

Totally Blind -67 

Further Testing Needed - 14 

Tested Results Nonconclusive - 46 

Not Tested at Risk- 13 

Other or Information Not Given - 30 

Cortical Visual Impairment - 159 

Hearing Status 

15-40 dB loss -63 

41-70 dB loss -151 

71-90 dB loss -99 

91+ dB loss -108 

Further Testing Needed - 39 

Tested Results Nonconclusive - 64 

Not Tested at Risk -96 

Information Not Given - 5 

Central Auditory Processing Disorder - 57 



Interesting Facts from the Year 2000 Annual Registration 
of Students with Visual Impairments 

By Nick Necaise, Coordinator of Federal Quota/Annual Registration, TSBVI Outreach 

The Annual Registration of Students who are Visually Impaired is the count of eligible students who are visually 
impaired in each school district of Texas on the first Monday in January. The date for this years Annual Registration 
was January 3, 2000. Here are some of the interesting facts we have learned about children with visual impairment in 
Texas. 



Total number of students registered = 6602 

Students listed in 1999 but not 2000 = 930 

New students added in 2000 registration =1115 

Braille readers=356 

Large print readers= 1207 

Regular print readers= 1392 

Auditory readers= 42 1 

Non readers= 2235 

Number of inf ants= 600 

Number of preschoolers = 795 

Number of kindergartners= 34 1 

Number of Legally blind students= 4457 

Number of districts with only 1 VI student= 202 

Number of districts with 1+ VI students= 703 

Number of districts 3 or less VI students= 394 



• Most VI students in a region - 1 372 in Region 4 
(Houston area) . 

• Least number of VI students in region - 76 in 
Region 9 (Wichita Falls area). 

• Braille reading student at the Texas School for 
the Blind and Visually Impaired - 53. 

• Number of students whose primary handicap- 
ping condition is VI= 3883. The first handicap- 
ping condition listed is VI. These students may 
or may not have additional handicapping condi- 
tions listed 

• Number of students whose secondary handicap- 
ping condition is VI= 1514. The primary handi- 
capping condition listed is other than VI. 

• Number of students whose third handicapping 
condition is VI= 1002. The first two handicap- 
ping conditions listed are other than VI. 

• Number of students who are VI only= 2329. 
No other handicapping conditions are listed. 

• Number of students with 2 or more handicap- 
ping conditions= 4273. 



Moebius Syndrome: A Life Without Smiles 

Reprinted with permission from the Moebius Foundation 
<http://www.ciaccess.com/moebius/front.htm> 

Moebius Syndrome is a rare disorder characterized by lifetime facial paralysis. People with Moebius Syndrome 
can' t smile or frown, and they often can' t blink or move their eyes from side to side. In some instances, the syndrome 
is also associated with physical problems in other parts of the body. 

The Moebius Syndrome Foundation is a nonprofit organization started by parents and people with Moebius Syn- 
drome. We've come together to do what we can to fight back - by spreading the word among the medical and lay 
communities and by supporting research into the causes, treatments, and possible cures for Moebius Syndrome. 






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Moebius Syndrome is extremely rare. Two important nerves - the sixth and seventh cranial nerves - are not fully 
developed, causing eye muscle and facial paralysis. The movements of the face, blinking, lateral eye movements, and 
facial expressions are controlled by these nerves. Many of the other 12 cranial nerves may also be affected, including 
the 3rd, 5th, 8th, 9th, 1 1th and 12th. 

WHAT ARE THE SYMPTOMS? 

The most apparent symptoms are related to facial expressions and function. In newborn infants, the first sign is an 
impaired ability to suck. Excessive drooling and crossed eyes may be present In addition, there can be deformities of 
the tongue and jaw, and even of some limbs, including club foot and missing or webbed fingers. Most children have low 
muscle tone, particularly of the upper body. 



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Symptoms may include: 

• Lack of facial expression; inability to smile 

• Feeding, swallowing and choking problems 
(sometimes tubes are necessary to thrive; be very 
careful with solid foods) 

• Keeping head back to swallow 

• Eye sensitivity due to inability to squint (sun- 
glasses and hats are very helpful) 

• Motor delays due to upper body weakness 

• Absence of lateral eye movement 

• Absence of blinking 

• Strabismus (crossed eyes, correctable with 
surgery) 



Drooling 

High palate 

Short or deformed tongue 

Limited movement of tongue 

Submucous cleft palate 

Teeth problems 

Hearing problems (due to fluid in ears, tubes are 
sometimes necessary) 

Speech difficulties (especially with closed mouth 
sounds and sounds involving the lips) 

Minor mid-line anomalies 



Although they crawl and walk later, most Moebius Syndrome children eventually catch up. Speech problems often 
respond to therapy, but may persist due to impaired mobility of the tongue and lips. As children get older, the lack of 
facial expression and an inability to smile become the dominant visible symptoms. Moebius Syndrome is sometimes 
accompanied by Pierre Robin Syndrome and Poland's Anomaly. 

HOW DOES IT OCCUR? 

Children are born with it. Although it appears to be genetic, its precise cause remains unknown and the medical 
literature presents conflicting theories. It affects boys and girls equally, and there appears to be, in some cases, an 
increased risk of transmitting the disorder from an affected parent to a child. Although no prenatal test for Moebius 
Syndrome is currently available, individuals may benefit from genetic counseling. 



HOW IS IT TREATED? 

Infants sometimes require special bottles (i.e. Haberman Feeder) or feeding tubes to maintain sufficient nutrition. 
Strabismus (crossed eyes) is usually correctable with surgery. Children with Moebius Syndrome can also benefit from 
physical and speech therapy to improve their gross motor skills and coordination, and to gain better control over 
speaking and eating. 

Limb and jaw deformities may often be improved through surgery. In addition, plastic reconstructive surgery of the 

face can offer benefits in individual cases. In some cases, nerve and muscle transfers to the corners of the mouth have 

been performed to provide an ability to smile. _ 

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HOW CAN I HELP? 

One of the most frustrating aspects of coping with Moebius Syndrome is the surprising lack of awareness among 
physicians and nurses. It occurs so infrequently that many children go undiagnosed for months and sometimes years 
afterbirth. Parents and those affected spend a lot of time and emotional energy explaining and re-explaining this rare 
condition. 

The rarity of Moebius Syndrome becomes, in effect, an additional complication of the disorder. Because so few 
members of the professional and lay public have even heard of Moebius Syndrome, medical and social support, as well 
as reimbursement from insurance companies are severely limited. This lack of support services puts additional burdens 
on individuals and their families in their attempts to cope with Moebius Syndrome. Lack of awareness also plays a role 
in limiting research into potential treatments and cures for Moebius Syndrome. 

THE HABERMAN FEEDER 

In some cases of severe feeding problems, such as those caused by Pierre Robin Syndrome or Moebius Syn- 
drome, the Haberman Feeder offers an alternative to enlarged and/or extra holes in the nipple and nasogastric tubes. 

Invented by the mother of a little girl with Pierre Robin Syndrome, the nipple rewards even the slightest effort from 
the baby's tongue or gums. If the baby cannot nurse at all, one can squeeze and release a limited volume of milk from 
the reservoir into the baby's mouth. 

To order the Haberman Feeder call (800)435-8316, or fax (815) 363-1246. 

DESCRIPTION OF THE 12 CRANIAL NERVES 

Moebius syndrome impacts the 6th and 7th cranial nerves - they are not fully developed, causing eye muscle and 
facial paralysis. The movements of the face, blinking, lateral eye movements, and facial expressions are controlled by 
these nerves. Many of the other 12 cranial nerves may also be affected, including the 3rd, 5th, 8th, 9th, 1 1th and 12th. 

1st = Olfactory nerve - relays smell 

2nd = Optic nerve - transmits visual information 

3rd = Oculomotor nerve - supplies external muscles of the eyeball with motor and sensory fibers 

4th = Trochlear nerve - also supplies external muscles of the eyeball with motor and sensory fibers 

5th = Trigeminal nerve - supplies muscles concerned with chewing and relays sensations from the face 

6th = Abducent nerve - concerned with lateral eye movement and blinking 

7th = Facial nerve - controls the muscles of facial expression, serves the taste buds on the front 
two-thirds of the tongue, and sensation to the skin of the fingers and toes 

8th = Auditory nerve - concerned with hearing and balance 

9th = Glossopharyngeal nerve - carries sensation and taste from the back of the tongue and 
throat; helps control swallowing 

10th = Vagus nerve - carries both sensory and motor connections to many organs in the chest and abdomen 

11th = Accessory nerve - supplies two neck muscles, the sternomastoid and the trapezius 

12th = Hypoglossal nerve - supplies the muscles of the tongue and some of the small muscles of the neck 



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RESOURCES 

The Moebius Syndrome Foundation 
P.O. Box 993 
Larchmont, NY 10538 
or call (914) 834-6008 



Minnesota Moebius Syndrome 
Support Network 
<moebius 1 @ worldneLatt.net> 
<http://home.att.net/~moebius 1/ 
index.htm> 



Moebius Warriors International 
Moebiusl.org 
PO BOX 169 
Neshkoro, WI 54960 
<http://www.moebius 1 .org/> 



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Materials in Spanish for Families of and Interventionists 
Serving Young Children Who are Blind, Visually Impaired, and Deafblind 

Reprinted with permission from SKI*HI INSTITUTE, 
Working Together with Families and Children for a Brighter Future, September 1999 

DB-LINK has a list of resources (articles, booklets, videos) in Spanish available for checkout Call (800) 438- 
9376 to request the list. The following papers can also be accessed on the DB-LINK website over the Internet in 
Spanish, <www.trwou.edu/dblink>, or write them for a copy. 



Communication Interactions: It Takes Two 

Early Interactions With Children Who Are Deafblind 

Expressive Communication: How Children Send 
Their Messages to You 

Overview of Deafblindness 



Psychological Evaluation of Children Who Are 
Deafblind 

Receptive Communication: How Children Under- 
stand Your Messages to Them 

Talking the Language of the Hand to the Hand 



There are a couple of newsletters available in Spanish. First is See/Hear News (formerly PS. News), published by 
Texas School for the Blind. This monthly newsletter contains articles for families and professionals on issues related to 
deafblindness and blindness with children from infancy to young adulthood. Many of the articles are available in 
Spanish on their website: <www.tsbvi.edu>. The second newsletter is Resources, published by California Deafblind 
Services. This quarterly newsletter has articles for families and professionals on issues related to deafblindness in 
children and youth. Their website is: <www.sfsu.edu/~cadbs>. Many fact sheets (24) are also available from this 
agency on a variety of topics such as communication, light sensitivity, touch, CVI, otitis media, etc. 

Vision Associates sells the two Tana Hoban baby board books, Black on White (Negro en Blanco) and White on 
Black (Blanco en Negro). They have several titles of children's books available in Spanish which could be incorpo- 
rated in a story bag or box with tactile objects connected with the story to use with children who are blind. Some of 
these titles are: Margaret and Margarita, The Doorbell Rang, Lizard's Song, Ten/Nine/Eight, Chair for My 
Mother, Jump Frog Jump, and Something Special for Me. They can be contacted at (407) 352-1200. 

The Blind Children's Center in Los Angles has several parent booklets available in Spanish. These include: Talk to 
Me I and //, Let's Eat, Move with Me, and Selecting a Program. Check out their website: 
<www.blindchildrenscenter.org> or call them at (800) 222-3566. 

The following booklets and videos are also available in Spanish: 

1 . Video: Building Blocks on center-based preschool programming and the Parent Early Childhood 
Education Series are both available from American Foundation for the Blind, (800) 232-3044. 

2. Videos: Functional Vision Learning to Look and Learning to See both on vision programming. The 
Helping Your Child Learn Series which provide information on teaching mealtime skills, dressing, choice- 

30 



making, adaptations, and dealing with challenging behaviors. Contact B VD Promo Services for information: 
(800) 438-9832. 

3. Video: What Are You Trying To Tell Me ?, a video on early communication with children who are 
sensory impaired with additional disabilities, is available from the infant program of the Foundation for Junior 
Blind in Los Angeles, CA, (800) 352-2290. 

4. Video and Book: The booklet on early orientation and mobility skills, Pathways to Independence, and 
video on adaptations in the preschool setting for preschoolers with vision loss, A Special Start, are 
available from the Lighthouse in New York City. Contact them at (800) 829-0500 or check out their 
website: <www.lighthouse.org>. 

5. Video and Book: Deborah Chen's new project PLAI materials (video and print) on developing 
communication skills with infants who are deafblind and multidisabled will soon be available in Spanish from 
Paul H. Brookes, publisher. 

6. Manual: The HELP at Home Activity Guide and HELP checklist are both now available in Spanish 
from VORT Corp. Contact them at (650) 322-8282. 

7. The Oregon Project Checklist is available in Spanish from Jackson ESD, 101 North Grape Street, 
Medford, OR 97501, (541) 776-8580 or (541) 779-2018 (fax). 



DBMAT and NFADB Update 

By Patricia McCallum, Secretary of NFADB, Seagoville, TX 



Summertime forTexans often means mowing the lawn more often, taking a well deserved family vacation, creating 
activities to keep our children busily happy, and relaxing in 70 degree air-conditioned environments. Summertime for 
the Members and Board of the Deaf-Blind Multihandicapped Association (DBMAT) means getting ready for our 
annual fall family conference ! 

Our Membership is gathering good used or new items from their other family members, their neighbors, co-work- 
ers, and local merchants to bring or send to our annual auction activities that are held during the conference. While they 
are doing that, the Board is working closely with our Conference Committee to plan all the particulars necessary to 
accomplish a successful fun-filled learning weekend for the families and professionals who will be in attendance. 

The theme of our 28th Annual Family Conference is "Stepping Stones." It will be held over the weekend of 
October 13-15, 2000 at Camp John Marc located near Meridian, Texas. DBMAT serves families of persons 
(children and adults) who are deafblind multihandicapped, deaf multihandicapped or blind multihandicapped and the 
professionals who work with them. Pre-registration is required. Registration and Child Vital Statistic Forms will be in 
our August Edition of our newsletter In Touch. For more information about DBMAT and our conference, call (972) 
287-1904, e-mail <DBMATorg@aol.com>, or visit our website at <DBMAT.org>. 

I also bring greetings from the National Family Association for Deaf-Blind (NFADB). NFADB is a non-profit, 
volunteer-based membership organization that is national in scope and advocates for all persons who are deafblind of 
any age and cognitive ability. NFADB 's philosophy is that individuals who are deafblind are valued members of 
society and are entitled to the same opportunities and choices as other members of the community. NFADB is the 
largest national network of families focusing on issues surrounding deafblindness. We have eleven Regional Directors 
who serve as liaisons providing information, referral, and resources to families and professionals in their multi-state 
area. We work in collaboration with national projects such as DB-LINK, the National Technical Assistance Consor- 
tium (NTAC), the National Coalition on Deaf-Blindness and the American Association of the Deaf-Blind (AADB). 

31 



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to 



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NFADB publishes a tri-annual informative newsletter titled News Frvm Advocates for Deaf- Blind. 

For more information contact Debbie Ethridge (Arkansas), Region 6 Director, at (501) '27 1-8632 or Pat 
McCallum (Texas), Secretary, at (972) 287-1904 ore-mail <Pajomac@ aol.com>. We invite you to visit our website 
<NFADB.org>. 



United, We Stand 

Terry Murphy, Executive Director, Texas Commission for the Blind 

F ve watched with interest over the years how words come in and out of vogue in the human services field. Some 
changes are easy to applaud, especially when the people most affected by the words seek and win the changes 
themselves. Because of the hard work by individuals and groups of Americans with varying disabilities, the term 
"handicapped" has given way to "disabled," and finally to "people with disabilities" in the Rehabilitation Act and other 
legislation during the last decade. 

The latest target for change in this arena, however, does not have my support because the dissenting opinions of the 
individuals most affected by the proposal — people who are blind — have been ignored. The target I'm talking about is 
the goal by a few people and organizations to eliminate the word blind from the vocabulary of state legislatures and the 
U. S. Congress by calling for an end to its separate identity in laws and programs. Advocates for its elimination proffer 
their opinion that "people with disabilities" sufficiently says it all during human service funding and service debates. 
Recognition of the special needs of people who are blind is superfluous to the process. 

Organizations of and for the blind have worked hard to educate legislators over the years to the unique barriers to 
employment and independent living posed by blindness because "existing services forpeople with disabilities" were not 
being made accessible to people who were blind. One important result of these education efforts is reflected in Title 
VII of the Rehabilitation Act Entitled "Independent Living Services for Older Individuals Who are Blind," Chapter 2 
provides funds to states to provide independent living skills to older individuals who are blind for whom significant 
visual impairment makes competitive employment extremely difficult to attain but for whom independent living goals are 
feasible. These funds, meager as they are, were celebrated across the nation and are used in Texas to prevent 
individuals from prematurely being relegated to nursing homes or caretakers when advancing age results in a loss of 
vision. With specialized training in adjusting to blindness, the majority of these individuals can remain in their homes and 
continue to be self-sufficient. 

The Texas Commission for the Blind hosted a meeting a few months ago to talk about the future of vocational 
rehabilitation and independent living services, not only in Texas, but also across the country. In the room, the combined 
experience in the field of blindness numbered well into the hundreds of years. My colleagues and I shared our 
experiences, reflecting on the latest Texas legislative session when the specialized services provided by the Commis- 
sion were being reviewed by the Sunset staff. The Commission entered the Sunset process confident in its record and 
proud that Texas chose the right path long ago when it created an agency with the sole purpose of building an effective 
system of services for individuals who were blind, including children and teenagers, which is rare in other states. 

It was inconceivable to most of us that anyone would want to dismantle one of the best agencies for the blind in the 
country. Other states had gone that path only to be met with diminishing returns on their investment in services. Unfor- 
tunately we were wrong. It soon became evident during the legislative session that individuals and groups calling for an 
end to separately funded programs for people who are blind in Washington are also active in Texas. Their supporters 
were primarily advocating for serving people with all types of disabilities out of one Texas agency without having a 



32 



separate budget for serving people who are blind. One advocate for change said that it is not necessarily accurate that 
individuals who are blind need that exact allocation of money, adding that agencies will always find a way to spend what 
they are given. The alternative of combining all human services programs into one elephantine agency with one budget 
also received some support. 

Those of us who have chosen to work in the field of blindness as long as I have are so convinced that the elimination 
of distinct, separate services and funding would be detrimental that we have renewed our commitment to stay active in 
the coming months and years in educating the public, legislators, and congressmen about blindness and its unique 
effects on a person's ability to live and work. I simply do not believe that specialized services for persons who are blind 
of the same or better quality will be available in any service system where they are the small minority voice among 
persons with disabilities. It takes someone specially trained in the effects of blindness to be an effective service 
provider, and my 28 years in the field have only solidified my resolve to fight for the right of Texans struggling for equal 
acceptance into the world of employment to have dedicated resources for appropriate training and qualified state 
personnel with which to partner. The old saying, "United, we stand; divided, we fall" has taken on a very personal 
meaning to me on this particular issue, because cooperation between consumers and organizations of and for people 
who are blind over these next few years is extremely important 

I'm often asked by parents of children who are blind, "How can I keep up with what's happening? How can I 
make sure that people trained in the complications of blindness continue to be available for my child now and when he's 
trying to go into the workforce?" As an individual, you can be extremely effective by sharing what you know to be facts 
about blindness with your community and state leaders. You can join one of the consumer groups or parent groups that 
brings together people with the same needs and quest for knowledge about state and national activities that may have 
an effect — good or bad — on services for people who are blind. Stay involved even when things appear to be going 
well. Apathy can kill an endangered program just as effectively as the lobbyists already at work. 

Congressional activities are already in motion in preparation for the reauthorization of the Rehabilitation Act in 
2003. At this time, the Act is still a separate entity within the broader Workforce Investment Act Vocational rehabili- 
tation programs are only "linked" to local workforce programs — a "cooperative" arrangement This federal change in 
1997 is somewhat similar to state changes in 1999 when the Texas Commission for the Blind kept its separate identity 
but now operates under the broad authority of the Health and Human Services Commissioner. 



Two forces are alive and well at the national level: A force that continues to want work done by rehabilitation 
agencies merged or transferred into local workforce programs, and a force that wants to eliminate the states' authority 
to have separate rehabilitation programs for people who are blind. Either action will potentially eliminate the word 
"blind" from employment and independent living programs. 

Programs for people who are blind were born in an era when leaders recognized that blindness was taking a toll on 
independence and employment that only specialized services could alleviate. Blindness still takes its toll. However, we 
have risen from that small beginning where the vast majority of blind people were expected to work in sheltered 
environments to today's multifaceted program of services where people can choose to pursue a broad range of careers 
that fits their interests and capabilities. 

The people who know best the struggles of finding their rightful place in society are those who are themselves blind. 
Organizations composed of blind people have fought a valiant fight to have specialized services and will continue to do 
so as long as service providers listen to them and adjust to identified needs. Organizations composed of parents of 
blind children, including parents whose children have other disabilities in combination with blindness, have fought a 
valiant fight to have brighter futures for their children. Many years ago, the Commission was sometimes the object of 
these fights, but we began to better listen and respond. My personal goal for the past ten years has been to create an 
atmosphere wherein we stand together rather than stand separately. 






33 



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i— i 

s 



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If you are blind, if you have a loved one who is blind, or if you merely believe that blindness should not keep 
someone from participating in society to the highest extent possible, then I invite you to stand with us as we continue our 
efforts to educate others about the need for specialized services. 



Information about Possible Changes 
in Texas Teacher Certification Requirements 

Compiled by the Alliance of and for Visually Impaired Texans (AVIT) 

BACKGROUND 

In 1995, the Texas Legislature transferred from the Texas Education Agency (TEA) to the newly created State 
Board of Educator Certification (SBEC) all responsibilities related to establishing the requirements for teacher certifi- 
cation of Texas public school teachers. SBEC is currently reevaluating and changing the requirements for a number of 
Texas teaching certifications. 

TEACHER CERTIFICATIONS FOR TEACHERS IN REGULAR EDUCATION 

At this point, SBEC has approved three levels of teacher certification for regular educators: 

• Early childhood to grade 4 which includes foundation subjects and enrichment areas such as art, PE, and 
music, 

• Grade 5-8 which includes the foundation areas only, and 

• Grade 8-12 certification. (A parallel bilingual certificate structure has also been proposed.) 



SBEC PROPOSALS RELATED TO STUDENTS WITH VISUAL IMPAIRMENTS 

SBEC has made the following three proposals related to certification requirements for teachers of students with 
visual impairments: 

Certification Requirements for Teachers of Students with Visual Impairments 

Endorsement Currently Required. 

Currently, teachers of students with visual impairments must have a teaching certificate plus an endorsement related 
to teaching these students. To obtain the endorsement, a teacher must pass coursework related to Braille, adaptations 
for low vision, anatomy, methods for teaching students with visual and multiple disabilities, and other specialized 
training in the areas unique to students with visual impairments, 

Recommendation Will Eliminate Requirement for VI Endorsement. 

In the fall, SBEC will recommend eliminating the endorsement for teachers of students with visual impairments thus 
eliminating the current requirement for these teachers to pass coursework related to Braille, adaptations for low vision, 
anatomy, methods for teaching students with visual and multiple disabilities, and other specialized training in the areas 
unique to students with visual impairments. SBEC will recommend one certificate for all teachers of students in special 
education, including students with visual impairments, and, as stated above, will not recommend an endorsement for 
teachers of students with visual impairments or any other special population. 

Special Education Certificates and Undergraduate Education 

To support the new teaching certificates for regular educators, SBEC has increased requirements for each certifica- 

34 



tion. For example, additional emphasis will be placed on reading for all three types of certifications. As a result of the 
increased course work required for regular certification, including special education training as part of required under- 
graduate preparation might no longer be feasible. Special education training may be taken at the graduate level only. In 
Texas, we currently have one university offering an undergraduate program that includes specific training in the field of 
visual impairments — Stephen F Austin in Nacogdoches — and another is being proposed by Texas Tech University in 
Lubbock. 

Changes in Requirements for Obtaining Emergency Certification 

An emergency certificate is a teaching certificate that allows a teacher to teach in a particular area while the teacher 
completes particular requirements for a standard teaching certificate. 

Initially, SBEC proposed eliminating the specialized emergency certification and replacing it with a 3-year certificate 
that would allow a teacher to teach in all teaching fields. The proposed requirements for the emergency certification 
included 1 ) a college degree of any type; and 2) the lack of a criminal history. Under this proposal, each school district 
would be required to develop training to support all emergency-certified teachers. 

A newer proposal recommends: 

• A Transitional Certification that includes 1 ) a special emergency certificate for special education and bilingual 
education; and 2) a requirement that the candidate must show progress toward certification; and 

• A Transitional Certification for teaching students with visual impairments. The candidate for the certificate 
would be required to complete 6 semester hours related to teaching students with visual impairments and 
Braille competency but would not be required to possess a teaching certificate or have the support of a 
certified teacher of students with visual impairments as a teacher-mentor. 

Providing Input to the State Board of Educator Certification 

Organizations and persons, including parents of children with visual impairments, may provide SBEC with informa- 
tion about teacher certifications in the following ways: 

1. SBEC Website. 

Persons and organizations may provide SBEC information about teacher certification requirements through its 
website (although the site is not uniformly accessible to blind consumers): <http://www.sbec.state.tx.us>. 

2. SBEC Toll Free Number. 

SBEC has the following toll free number for requesting and providing information related to teacher certification : 1 - 
888-863-5880. 



3. SBEC Information Contact. 

SBEC employee Lennie Edwards may be contacted by email to request or provide information at the following 
email address: <ledwards@mail.sbec.state.tx.us>. 

4. Attending SBEC Board Meetings. 

SBEC will have meetings on November 3, 2000. Information on the Board's agenda is available at: <http:// 
www.sbec.state.tx.us/geninf o/board_meet_agenda.htm>. 

5. Correspondence by Mail. 

Letters may be sent by mail to SBEC board members at the following address: State Board for Educator Certifi- 
cation, 1001 Trinity, Austin, Tx 78701 - 2603. Letters may be faxed to the following number: (512) 469-3002. 

35 



2 
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03 
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SBEC Board Members include: 

James D. Harris, Chair 
Ed Patton, Vice Chair 
Cynthia Tassos Phillips 
Mary E. Resendez 
Antonio (Tony) Sanchez 
Mary Margaret Rucker 
Annette T. Griffin, Ph.D., 
Keith Sockwell 



Lubbock 


Carmel Borders 




Austin 


Abilene 


Arthur Lacy 




Mc Kinney 


Austin 


James B. Price 




Cooper 


San Antonio 


Xavier Rodriguez 




San Antonio 


Mission 


Kenneth R. Craycraft, 


Ph.D. 


Huntsville 


Nassau Bay 


Arturo Almendarez, Ph.D. 


Texas Education Agency 


Carrollton 


William Sanford, Ph.D. 




Higher Education 


Northwest ISD 






Coordinating Board 



Department of Education Issues Updated Policy Guidance 
on Educating Students Who Are Blind 

Reprinted with permission from American Foundation for the Blind 

The Department of Education, Office of Special Education and Rehabilitative Services has issued "Educating Blind 
and Visually Impaired Students; Policy Guidance" updated to reflect changes in the 1997 amendments to the Individu- 
als with Disabilities Education Act Below are a few highlights based on the major changes in the law that applies 
specifically to students who are blind or visually impaired. 

ASSISTIVE TECHNOLOGY 

• The consideration of assistive technology needs and the full range of devices and services that are available 
needs to occur as early as possible. 

• If the IEP team determines that a child needs to use a school-purchased assistive technology device in the 
child's home or in other settings the device must be provided at no cost to the parents. 





GC 




£ 




a 




£ 




% 




«> 




£ 



BRAILLE 

• For a child to become proficient in Braille, systematic and regular instruction from knowledgeable and 
appropriately trained personnel is essential. 

• IEP teams must ensure that the time allocated for Braille instruction is adequate to provide an appropriate 
level of instruction. 

• An appropriate level of instruction must also be provided for children with low vision who utilize low vision aids. 

• While Braille may be the reading medium of some students, the IEP team must consider methods for 
teaching writing and composition, including the appropriate use of assistive technology. 

• As a supplement to Braille instruction, the IEP team must also consider what other skills a child might need 
to access information including the use of cassette recordings, personal computers with speech output or a 
Braille display, optical scanners with speech output, and reader services. 

EDUCATION WITH NON-DISABLED PEERS 

• The parents of the child must be members of any group that makes placement decisions. 

• Placement decisions must be based on a child's IEP; making placement decisions before development of the 
IEP violate Part B of IDEA. 

• The placement team must consider the full range of settings available appropriate in making placement 
determinations. 35 






• Public agencies must make available a continuum of alternative placements or a range of placement options, 
to meet the needs of students for whom the regular classroom may not be the LRE placement. 

O&M 

• The Department recognizes the importance of O&M in participating in school and in an individuals eventual 
access to employment opportunities. 

• Orientation and mobility services should be provided as early as possible in a child's education and updated 
and supplemented periodically as needed. 

• Travel training should be considered for blind and visually impaired children, especially those with other 
disabilities, e.g., significant cognitive disabilities. 

The full text of the policy guidance document can be found at <http://www.afb.org/grg/policy_2000.html > or 
<http://ocfo.ed.gov/Fedreg/other/q200/060800a.txt>. 



Kate's Corner - continued from page 1 

One of the big changes has us dropping breadcrumbs from Outreach to the new office of Debra Sewell, Education 
Specialist with VI Outreach. After seven years in Outreach she is moving her office to the Curriculum Department. 
We won't say goodbye because we refuse to let her go. Debra is replacing the fabulous Nancy Levack, Curriculum 
Director, who is leaving for Utopia (Texas that is). Also departing Curriculum this year is Brigitte Starkey who will 
devote her full energies to her own company. We appreciate all the fine work they have done in developing educational 
materials for the families and professionals involved with visually impaired children. 

Speaking of those materials, one of the products from our Curriculum Department is the book Teaching Students 
with Visual and Multiple Disabilities: A Resource Guide written by Millie Smith (formerly with Outreach) and 
Nancy Levack. Millie and Nancy were recently awarded the C. Warren Bledsoe Award at AER International for this 
publication. We are very proud of their accomplishment and want to extend our heartiest congratulations. 

Another award, the Mary K. Bauman award, was given at AER International this year to our very own Dr. Phil 
Hatlen, Superintendent of TSB VI. It is given to an individual who has made a significant contribution to the education 
of children who are blind and visually impaired. How suiting that this award was given to a person such as Phil who, in 
the words of Dennis Thurman, is "a teacher in the deepest, noblest sense of that title ... a teacher with only the 
betterment of children in mind." 






Rita Livingston, Principal of Comprehensive Programs, has made the decision to leave TSB VI. We wish her the 
best with her new endeavors. Miles Fain will be taking over as Rita departs. Many of you know Miles as both a 
teacher and assistant principal here at TSBVI. Dr. Lauren Newton will continue as Principal of Special Programs. Be 
sure to read her article on page 38 that describes some of the exciting new short programs available to students with 
visual impairments who are attending school in their local independent school districts. Other changes for the coming 
year include a new program structure for the Comprehensive Programs, expanded distance education efforts, and the 
continued remodelling of the TSBVI facility. 

Last but not least, we want to welcome Ann Adkins to Outreach. Ann will be taking the Outreach position vacated 
by Debra Sewell. Ann has recently been a teacher of the visually impaired in the Eanes ISD, but has a long history as 
both a regular and special educator. We know she has much to offer the children of Texas in her new role with 
Outreach and look forward to working with her. 

37 



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Short Classes for School Year 2000-2001 at TSBVI 

By Dr. Lauren Newton, Principal of Special Programs, TSBVI 

This article describes the short classes offered at TSBVI during the coming school year. Short classes are three to 
five days in length. They provide intensive instruction on a very specific skill related to vision impairment. 

At this time, short classes are for students functioning at or near grade level. Referrals should be made through the 
local school district, so if you see a class that would be good for your child, talk to your VI teacher or special education 
director. Your child can participate in one or more programs during the school year. Students in five-day classes 
should bring their homework with them to complete during our supervised daily study hall. 



PROGRAMS OFFERED 

1. Disability-specific classes with a p re-determined curriculum 

• Independent Living: Food Management & Personal Organization for ages 12-15. Students attend four 3 
day weekends: 

September 14-17 

October 27 - 30 

January 12- 15 

February 16 - 19 

• Technology Week (secondary students) has two separate programs, each one week in length: 

• October 15 - 20, 2000 for Braille 'n Speak/Braille Lite 

• February 25 - March 2, 2090 1 for JAWS for Internet 

• Math Week (secondary students): April 1-6, 2001 

2. One-week individualized instruction on specific IEP objectives 

Students receive one-on-one intensive instruction in any disability-specific IEP objective(s) jointly selected by the 
LEA and TSBVI. 



High School Students 
October 1 - 6, 2000 

or 
January 21 -26, 2001 



Middle School Students 

November 5 - 10, 2000 

or 

February 4 -9, 2001 



Elementary School Students 
December 3 -8, 2000 

or 
March 18-23,2001 



HOW A SPECIAL PROGRAM CAN HELP 

Provides intensive instructional boost with only a short time away from home 

Teaches disability-specific skills that are pre-requisite to success in the regular classroom 

Provides individualized instruction to meet specific learning needs of academic students 

Provides temporary removal of multiple demands 

Addresses learning gaps caused by instructional overload 

Provides opportunity for professional collaboration regarding the individual needs of students 

38 



SHORT TIME AWAY FROM HOME 



Students bring local assignments (homework) to complete during tutored study halls 
All students return to local school at end of short program 
Participation in special programs is not a change in placement 
Students are not counted absent from their local schools 
LEAs support transportation costs 

A TYPICAL DAY 

During the school day, students focus on class content related to their IEP objectives. After school, they participate 
in Independent Living and Recreation/Leisure activities with other visually impaired students in TSB VTs carefully 
supervised residential setting. Tutored Study Halls are provided for week-long classes, during both the school and 
residential shifts, for students to work on assignments they bring with them from their local classes. Study Hall helps 
them keep up with classwork missed while at TSB VI. Secondary students attending the special classes also partici- 
pate in a Teen Life class facilitated by a social worker, designed to let students share experiences with one another. 

ABOUT SHORT PROGRAMS 

There is growing national recognition that present educational models for serving visually impaired students may be 
incomplete. In particular, many students can succeed in their local schools if they receive a short, intensive instructional 
boost in certain disability-specific areas. These students do not need long-term services in a special classroom or 
school. But they can need intensive support during critical periods, which may be difficult to provide in the local school 
because of competing needs and limited resources. Residential schools for the visually impaired have the 
multidisciplinary expertise in the area of vision services to provide short, intensive classes for these students. The 
rationale for these programs is that a short time away from the classroom at present will result in improved overall 
learning in the long run, because the students will be better able to benefit from future instruction. 

During the 1999-2000 school year, TSB VI began offering a new kind of service delivery model: short-term pro- 
grams. Classes were provided for academic-level students in the areas of Independent Living Skills and Technology, 
both fully attended and highly successful. This year we will expand our offerings significantly, with many short classes 
being offered throughout the school year. We will continue to offer the special classes. 

HOW TO REGISTER 

Registration for short classes begins by contacting a TSB VI Special Programs' staff member (see contacts below). 
At that time, we will talk together about the student and the program. If there is a mutual decision to continue the 
process, formal registration procedures will be described and initiated. Students must apply for any short class no later 
than 8 weeks before the program begins. In order to provide good ratios class sizes are limited. Eligible students will 
be admitted in the order in which they apply. 

MORE INFORMATION 

If you work with a student who may benefit from any of these programs, or if you would like to share or receive 
additional information, please contact: 



Dr. Lauren Newton, Principal of Special Programs 

(512)206-9119 

email: <LaurenNewton@tsbvi.edu> 



Jeri Cleveland, Lead Teacher for Special Programs 

(512)206-9346 

email: <JeriCleveland@tsbvi.edu> 



39 



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CLASSIFIED 



Mail or e-mail your new classifieds to Jim Durkel at: 

TSBVI Outreach, 1 100 West 45th St., Austin, TX 78756, orjimdurkel@tsbvi.edu. 

An up-to-date Statewide Staff Development Calendar is posted on TSBVFs website at <www.tsbvi.edu>. 



\i 






4 

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Future Horizons 

A weekend workshop for families 

of children with 

visual impairments (6-9 years old) 

September 22-24, 2000 

Galveston, Texas 

For further information contact 

Jeannie Mojica-LaCrosse 

(512)206-9268 



The Deaf-Blind Multihandicapped 
Association of Texas (DBM AT) 
presents the 
28th Annual Family Conference 
'Stepping Stones' 



'« 



,>? 



October 13 -15, 2000 

at Camp John Marc 

located near Meridian, Texas 

This conference is for families 

of persons who are 

deafblind multihandicapped, 

deaf multihandicapped or 

blind multihandicapped and 

the professionals who work with them. 

Pre-registration is required. Registration and Child Vi- 
tal Statistic Forms. For more information about DBMAT 
and our conference, call (972) 287-1904, e-mail 
<DBMATorg@aol.com>, or visit our website at 
<DBMAT.org>. 



Make your plans now to attend the 
2001 Texas Symposium 
on Deafblind ness 

at the Radisson Hotel Central Dallas 
February 15 - 17, 2001 

This conference will offer a variety of state and national 
speakers focusing on various issues in the field of 
deafblindness. 

Registration flyers will be sent to SEE/HEAR recipi- 
ents in the Fall of 2000. For more information or to 
add names to the mailing list contact Beth Rees at (5 1 2) 
206-9103. 



INSITE: A Home-Based Model 
for Infants, Toddlers, and 
Preschoolers Who Are 

Sensory Impaired 
With Other Disabilities 

This six-day training is for professionals who work 
with these children and their families. If you are 
interested in attending this training or bringing this 
training to your area, please contact Gigi Newton at 
(512) 206-9272 or email her at 
<GigiNewton@ tsbvi.edu>. 

Trainings have already been schedule in these locations: 



San Angelo, Texas 

Part I 

September 25-27, 2000 

Part II 

October 23-25, 2000 

Contact: Debbie Louder 

at (915) 658-6571 



Houston, Texas 

Part I 

November 8- 10, 2000 

Part II 

Jan. 30-31 & Feb. 1,2001 

Contact: Jake Peno 

at (7 13) 744-6378 



40 



Second Annual Sports 
Extravaganza for Blind 

and Visually Impaired Students 
October 13 & 14, 2000 

Nimitz High School, Irving, TX 

Students who are visually impaired and blind ages 
birth-22 years old will have the opportunity to 
participate in a variety of adapted sports activities 
including baby and parent obstacle course, wheelchair 
obstacle course, goal and beep ball, archery, shot putt, 
25- 100 meter dashes, long jumps, and softball throw. 
Parents, PE teachers, and adapted PE teachers are 
encouraged to attend with their student(s). 

For more information contact: Kitra Hill Gray (972) 
348-1580 or Randy Foederer (972) 348-1570. 



Putting the Pieces Together for 

Students with Severe Disabilities 

Effective Teaching Strategies for 

Children with Severe Disabilities 

This training will focus on effective teaching stragegies 
which meet the needs of people who work with studetns 
with severe and profound disabilities and will provide a 
framework for implementing innovative programs. The 
participants will develop an action plan to facilitate the 
steps needed to masimize the potential for children with 
severe disabilities. Target Audiences: Teams of school 
personnel and the family. 

Training Locations and Dates: 

September 26-27, 2000 November 15-16, 2000 

Amarillo: Region 16 ESC Huntsville: Region 6 ESC 

Contact: Stormetta Stateler Contact: Nodya Thornton 

(806) 376-5521 (409) 435-2195 



October 17-18,2000 

Midland: Region 18 ESC 

Contact: Lu Cleere 

(912)563-2380 



December 5-6, 2000 

Edinburg: Region 1 ESC 

Contact: Peter Graves 

(956)984-6165 



For more information call the Low Incidence Disability 

Project at ESC Region 3 - (361) 573-0731 or email 

<sdavis@esc3.net> or <mscott@esc3.net> 



REGIONAL WORKSHOPS 



September 22, 2000 

Setting Curricular Priorities for Students with 

Visual Impairments 

Location: Region X ESC, Richardson, TX 
Presenters: Amanda Hall Lueck from San Francisco 
State University 
Contact: Kitra Hill Gray (972) 348-1580 

December 14-16,2000 
The Arc of Texas and Region 20 ESC Present 
The 8 th Annual Inclusion Works! 
Conference: Diversity Shines 

Location: San Antonio, TX 

Contact: (800) 252-9729 or <www.thearcoftexas.org> 

January 24, 2001 

Gathering Information and Programming 
for Students with Visual Impairments 
and Profound Disabilities 

Location: Region X ESC, Richardson, TX 
Presenters: Jenny Lace and Robbie Blaha, Texas School 
for the Blind and Visually Impaired 
Contact: Kitra Hill Gray (972) 348-1580 

January 25,2001 

Meeting the Unique Needs of Students 

with Hearing and Visual Impairments 

Location: Region X ESC, Richardson, TX 
Presenters: Jenny Lace and Robbie Blaha, Texas School 
for the Blind and Visually Impaired 
Contact: Kitra Hill Gray (972) 348-1580 

March 28, 2001 

How Do Adult Rehabilitation Agencies 

Assist People with Visual Impairments: 

Criss Cole and Lions World Rehabilitation Centers 

Location: Region X ESC, Richardson, TX 
Contact: Kitra Hill Gray (972) 348-1580 

Spanish-Speaking Parents of 
Children with Visual Impairments 

TSBVI Outreach has a Spanish-Speaking Parent 
Network for parents of children with visual impairments. 
If you want to join this network, get the name of another 
Spanish-speaking parent you can contact for support and 
information, or want articles and information in Spanish, 
please contact Jean Robinson at (512) 206-9418 or 
email <JeanRobinson@tsbvi.edu>. 



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SEE/HEAR 

published quarterly: February, May, August, and November 

Available in Spanish and English on TSB VFs website at <www.tsbvi.edu>v 

Contributions to the newsletter can be mailed or e-mailed to section editors at: 

TSBVI Outreach 
1100 West 45th St. 
Austin, TX 78756 



Deadlines for articles are: 

December 1st for the Winter edition 
March 1st for the Spring edition 
June 1st for the Summer edition 
September 1st for the Fall edition 

Section Editors 

Family - Jean Robinson (5 12) 206-9418; 

<JeanRobinson @ tsbvi.edu> 

Programming - Ann Rash (5 12) 206-9269; 

<AnnRash @ tsb vi.edu> 

and Gigi Newton (5 12) 206-9272; 

<GigiNewton @ tsbvi.edu> 

Syndromes/Conditions - Kate Moss (512) 206-9224; 

<KateMoss @ tsb vi.edu> 

News & Views - Jim Durkel (512) 206-9270; 

<JimDurkel @ tsbvi.edu> 



Production Staff 

Editor-in-Chief- Kate Moss (512) 206-9224; 

<KateMoss @ tsbvi.edu> 

Layout Editor - Craig Axelrod (512) 206-9435; 

<CraigAxelrod@ tsbvi.edu> 

Production Assistant - Jesse Garcia (512) 206-9314; 

<JesseGarcia@ tsbvi.edu> 

TCB Editor - Edgenie Lindquist (5 12) 377-0578; 

<edgeniel@tcb.state.tx.us> 

Audio Production - Recording for the Blind and 

Dyslexic, Austin, TX. 



If you no longer wish to receive this newsletter, 

please call (512) 206-9314; email 

<JesseGarcia@ tsb vi.edu>. 




This project is supported by the U.S. Department of Education, Office of Special Education Programs (OSEP). Opinions expressed 
herein are those of the authors and do not necessarily represent the position of the U.S. Department of Education. 

The Outreach Programs are funded in part by IDEA-B Formula, and IDEA-D Deaf-Blind Federal grants. 

Federal funds are administered through the Texas Education Agency, Division of Special Education, to the Texas School for the Blind 
and Visually Impaired. Texas School for the Blind and Visually Impaired does not discriminate on the basis of race, color, national 
origin, sex, religion, age or disability in employment or the provision of services. 



Texas School for the Blind and Visually Impaired 
Outreach Department 
1100 West 45th St. 
Austin, Texas 78756 



NON-PROFTTORG. 
U.S. POSTAGE PAID 
AUSTIN, TEXAS 
PERMIT NO. 467 



Cathy Johnson 
Kentucky School for the Blind 
1867 Frankfort Avenue 
Louisville, KY 40206 




BBH 



SEE/HEAR 



A QUARTERLY NEWSLETTER ABOUT VISUAL IMPAIRMENTS AND DEAFBLINDNESS FOR FAMILIES AND PROFESSIONALS 
A collaborative effort of the Texas School for the Blind and Visually Impaired and Texas Commission for the Blind 



Fall 2000 



Volume 5, No. 4 



Table of Contents 

FAMILY 

Dreams, Plans and Self-Determination 2 

Ten Reasons to Introduce Blind Role Models to Families 5 

Victoria's Eyes 7 

The Patience of Justin 11 

SYNDROMES/CONDITIONS 

Fetal Alcohol Syndrome 14 

What is Fetal Alcohol Syndrome 17 

PROGRAMMING 

It's Almost Time for the 2001 Texas Deafblind Census 18 

Disabled Find Many Barriers Online 19 

Tips for New VI Teachers 23 

Educational Services in Texas 

for Children with Visual Impairments and Deafblindness 25 

The Importance of Touch in Parent-Infant Bonding 29 

NEWS & VIEWS 

Tell Me, and I'll Forget 32 

In Response 33 

Legislative Update 35 

National Braille Press Meeting the Growing Demand for Braille 36 

New List for Blind Parents Now Available 37 

Classified 38 



Kate's Corner 

It's ironic how events occur. For the past several weeks I have been busy revising materials for the "Through Your 
Child's Eyes" workshop. This workshop was developed about ten years ago by Dr. Dixie Mercer and Sue Currey, 
who at that time worked with VI Outreach. It has been a gift to many Texas families in the early part of their journeys 
toward understanding their child's disability. I had the priviledge of working with Dixie, Sue, and Sue's husband, Jim 
Currey, when the focus of the workshop was expanded to include families of children with deafblindness. Although 
others of the Outreach team got involved in different aspects of the workshop when Dixie left Outreach and Sue took 
a disability retirement, it was always Sue's and Dixie's creation. Sue was very proud of it. 



Last week we learned that Sue had passed away. After years of overcoming illness brought on by diabetes, she 
was gone. Sue was one of the most courageous people I've ever known, though I doubt she would have described 
herself that way. She just kept fighting back because she loved her life and her husband. She taught me a lot about 
living with a visually impairment, but she taught me more about life. We shared a love of children and a deep respect 
for families. She was a friend. I would like to dedicate this edition of SEE/HEAR to her memory. 



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Dreams, Plans and Self-Determination 

By Craig Axelrod, Teacher Trainer, TSBVI, Texas Deafblind Outreach, 
with Edwin Carter, Teen, Dallas, TX and Rosie Yanez, Mentor, El Paso, TX 

A seminar entitled "Self-Determination: Creating a Path to the Future" sponsored by the National Technical Assis- 
tance Consortium for Children and Young Adults who are Deaf-Blind (NTAC), took place in Columbus, Ohio on July 
29 - August 4, 2000. It was held in conjunction with the 25 th Anniversary Conference of the American Association of 
the Deaf-Blind (AADB) . The conference was attended by approximately 350 people who are deafblind, as well as 
650 interpreters, support service providers (SSPs), conference facilitators, presenters, and interested observers. 

At the seminar, a group of 2 1 deafblind teens/young adults and young adult mentors from 9 states explored such 
questions as: What does self-determination mean to me? How have deafblind adults become self-determined about 
their lives? How can I become more self-determined about my own life? What interests, dreams and challenges do I 
share with other deafblind teens and young adults? What does it mean to be a mentor? 

Several three-person teams participated in the training. Each team included a teen/young adult, mentor and state 
deafblind project representative. Edwin Carter (teen/young adult) from Dallas, Rosie Yanez (mentor) from El Paso 
and I represented Texas. Teams that were selected agreed to attend the seminar, develop an Action Plan to support 
the teen/young adult in becoming more self-determined, then maintain contact for a year and participate in follow-up 
activities using e-mail and/or the Internet. 

WHAT IS SELF-DETERMINATION? 

Brian Abery, from the University of Minnesota, defined self-determination to the group as "Living the way I want to 
live instead of how others expect me to live," and "Taking the amount of control over your life you want, in the areas 
you want to control." There are many short term and long term decisions that people make to control their lives. Most 
people don't want to be in total control of every part of their lives, but may want to share control with family, friends, 
and others. Letting someone else take control of certain things, however, might mean accepting responsibility for other 
things. Giving up control may also require compromise. For example, letting someone else cook the meals might mean 
you have to do the dishes or take out the garbage, and you may also have to eat foods that are not your favorites. 

Having control over decisions feels good, but may also be scary sometimes because it means accepting responsi- 
bility for decisions that might not turn out well. It can be frustrating and depressing, though, for other people to make 
all the decisions, even with the best intentions. Everyone needs opportunities to make decisions for themselves, even 
if that might mean making mistakes. 

Craig: What are some things in your life that you want to control? 

Edwin: I already have independence in the dorm, and I control management of my time. I want to have more 
control about traveling in Austin and other places. 

Rosie: I want to be assertive and not have to depend on other people. I must stand up for myself. I don't want 
to fail in college because of poor services. I can't control what services are provided or offered, but I can advocate for 
what I think I need. I also want to have better control of my temper because my own attitudes will influence how other 
people respond to me. I want to be an advocate for other people with Usher Syndrome. 

WHAT DO I NEED TO BECOME SELF-DETERMINED? 

Maricar Marquez, from Helen Keller National Center (HKNC) in New York emphasized that, in order to be self- 

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determined, it's important to have the necessary skills, knowledge, attitudes/beliefs and supports. Susie Morgan, with 
NTAC, noted that skills in areas such as communication, independent living, orientation and mobility, decision making, 
self-advocacy and self-regulation are essential. Knowledge of rights and responsibilities, educational options, re- 
sources and systems, and society (on a local, national and global scale) are also important. A self-determined person's 
attitudes and beliefs are indicated by a positive outlook on life, self-confidence, high self-esteem, a sense of determina- 
tion, and internal control. Supports can originate in different places. For example, family members and close friends 
might offer emotional support. Communication support might come from support service providers (SSPs), interpret- 
ers or interveners. Access to technology and enhanced physical accommodations might provide the necessary educa- 
tional support. People who want to become self-determined about something must identify the skills, knowledge, 
attitudes/beliefs and supports they already have, and those they need. 

Following Maricar's presentation, a panel of deafblind adults was introduced. Each adult gave a brief autobiogra- 
phy to the group, then individual panel members met with the teams from different states. They talked about the skills, 
knowledge, attitudes/beliefs and supports they have and those they are still developing or acquiring. 

Craig: What skills, knowledge, attitudes/beliefs or supports do you have to be self-determined? What do you need? 

Edwin: I need to learn to stop waiting and do things now. 

Rosie: I have the skills to speak up for what I believe in, but I also need to be around other deafblind people who 
understand and support me. At AADB people weren't focusing on my Usher Syndrome or my vision and hearing 
problems. I could be myself. I need role models who are good self-advocates and mentors. That will also help me 
be a good mentor for Edwin. 

HOW CAN I PLAN FOR THE FUTURE? 

Jerry Petroffand Cindy Ruetsch, from the New Jersey Technical Assistance Project, guided teens in the group 
through a step-by-step process that included dreaming about "What I can be," to determine which parts of those 
dreams are realistic and figure out how to reach them. When dreaming about the future it's important to think big. 
Without dreams a person isn't motivated to move ahead and may not know in which direction to move. Visions move 
people closer to their dreams, within a time frame of five to ten years. To help clarify a vision someone can say, "In 
order to reach my dream, I must/should/can...," then ask, "Is my vision positive? Is my vision possible?" If both 
questions can be answered "Yes," the next step is to identify three goals related to the vision. These goals are smaller 
pieces of the vision that can be accomplished within a year. It's also important to know what people and supports or 
resources are necessary or can be helpful in completing those goals. Three "next steps" related to each goal are then 
selected to be achieved in one or two months. 



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After Jerry and Cindy's explanation of a step in the planning process, each three-person team met to help its teen 
develop that step. By day's end, the teens all had Action Plans of goals and specific steps to complete within the 
coming year that will help them move toward their individual dreams and visions. 

Craig: What is one of your dreams and your vision to reach it? What goals and "next steps" will you accomplish 
to move closer toward that vision and dream? 

Edwin: I want to own my own technical or computer business, but first I'll need to attend a technical college. I 
graduate from TSD (Texas School for the Deaf) next May and plan to start college the following fall. I'm getting Bs in 
my high school classes now, and I've already received application information from two colleges. 

Rosie: I want to share my experience and be a teacher with deafblind children. I can make a big difference. I'm 

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going to college now for my degree. In the next year I want to improve the interpreter program at my community 
college for myself and for other students who are deafblind. I'll need to identify the issues first, and then start looking 
for solutions. 

WHAT IS A MENTOR? 

Mentors are essential members of the three-person teams. All of the mentors at the seminar participated in addi- 
tional training, to learn what being a mentor means and to discuss ways that mentors can help teens/young adults 
achieve their dreams. 

Mentors draw from their own experience and share it with others who find themselves in similar situations. Mentors 
give empathy, support and understanding. Mentors are trustworthy advisors who do not judge others as right or 
wrong, but remain open to different perspectives and beliefs. Mentors may not be able to solve other people's 
problems, but they are good listeners who offer suggestions and ideas. Mentors also help others become good self- 
advocates who are knowledgeable about issues and their rights. 

Craig: Rosie, what does being a mentor mean to you? 

Rosie: I want to be someone Edwin can look up to like a big sister... to answer questions, give advice and help him 
feel good about himself. We can help each other. 

Craig: How will you help Edwin continue to make progress toward his dreams? 

Rosie: Not to bug him, but to keep in touch and become a valuable person in his life. 

Craig: Edwin, in what ways is Rosie a good mentor? 

Edwin: Her experience will help me a lot as I plan my future. We work as a team. 

Rosie: I remember my first experience 
with a deafblind adult. A long time ago Kim 
Powers came to El Paso. My Mom was driv- 
ing Kim to the airport and signing in her hand. 
Kim was so happy. I was sitting in the back 
seat watching and thought if she can be happy, 
so can I. You can be happy or sad, but happi- 
ness is possible. 

COMMUNITIES & CONNECTIONS 

While seminar participants attended daily 
training sessions about self-determination, 
time was also set aside for tours and other 
more informal get-togethers. These occa- 
sions provided opportunities to become bet- 
ter acquainted with each other, as well as to 
meet, work, and relax with deafblind adults. 
The deafblind adults attending this conference 
were impressive role models for living self- 
determined lives. 





WW1 



By the end of their week together, teens and mentors had developed and strengthened relationships among them- 
selves and realized that they are members of a larger deafblind community. While planning gets underway for the next 
national AADB Conference in 2003, discussion has also begun about creating an affiliated organization of and for 
deafblind teens/young adults. Participants of this year's seminar on self-determination may become the nucleus of a 
planning committee for a teen/young adult component at the 2003 Conference. 

Craig: What did you enjoy most about the Conference? 

Edwin: I met many interesting deafblind adults. 

Rosie: I enjoyed meeting other deafblind teens and mentors and sharing experiences with them. 

Craig: Will you continue your involvement with other participants from the Seminar? 

Edwin: I'm doing a lot in school (homework, football, work, etc.), but I want to stay involved. 

Rosie: Yes. I already got e-mail from Andria in Oregon and Theresa in California. 

Craig: What can we do to organize deafblind teens/young adults in Texas? 

Edwin: Start a support group in Texas for teens and young adults. Join AADB. 

Rosie: Keep in touch. Find places where teens can use computers. Get an eCircle going. Raise money every 
year for a fun trip together. 

As a participant in NTAC's "Self-Determination" Seminar and as a first time attendee of an AADB Conference, I 
was profoundly impressed by the high level of energy, commitment, mutual support, optimism and information offered 
by everyone there. I strongly encourage deafblind teens and young adults in Texas to meet each other at a local, 
regional, and state level. They should also consider becoming involved with a national organization such as AADB. 

Editor s note: If you are interested in self-determination for deafblind teens and young adults, contact Rosie 
at roseyanez@hotmail.com, or Edwin at TheBull 1 6@juno.com. Edwin and Rosie will be speaking about self- 
determination at the statewide Deafblind Symposium in Dallas, February 16-17, 2001. Mark your calendars. 



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Ten Reasons to Introduce Blind Role Models to Families 

By Jean Robinson, Family Support Specialist, TSBVI, VI Outreach 

During my ten or so years of working with families I have found that children cannot effectively make progress in 
isolation; they come with parents. Parents can be a teacher's or administrator's best advocate or worst nightmare. 
Either way they cannot and should not be ignored. Often I have heard comments about parents like these: "They 
always want more." "They are never satisfied." "They always complain." "They don't 'get it." "They don't see the big 
picture." Too many times I feel parents are patronized when they express their concerns or ask questions. 

Professionals in the small field of vision impairments are immersed in the world of blindness. They tend to forget 
sometimes that parents don't know the basics. Most parents have little, if any, experience with blindness. Often they 
are too scared to think about their child becoming an adult. But these parents are just like us. We all need dreams, 
even unrealistic ones, to motivate and challenge us each day. I'm sure I am not the only parent who told her children 

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they could be rocket scientists. I have also been known to buy a lottery ticket or two, even though the odds of winning 
are ridiculous. Parents of a child with a disability become short-circuited when they cannot nurture dreams in their own 
lives, dreams that include the lives of their children. 

A practical, informative way to help parents build dreams for their child's future is to connect them with blind 
mentors or role models. Our last "Future Horizons Family Gathering" gave over seventy parents an opportunity to ask 
basic questions about living with a visual impairment. It also helped them to begin to look into the future of their child 
with joy and expectation instead of fear. The mentors were solicited from Texas Commission for the Blind casework- 
ers and counselors, vision teachers, and also from consumer groups (National Federation of the Blind Texas, American 
Council of the Blind Texas, Texas Federation of the Blind). The mentors varied in ages (14 years and older) and 
background. Students with visual impairments, along with their siblings, were able to spend individual time with a 
variety of mentors. In some cases, it was the first time they ever meet another person with a visual impairment. That 
alone was a powerful experience. 

The parents also spent both informal and structured time talking with mentors. Two mentors sat at each of five 
tables while the parents rotated to each table to discuss a variety of topics related to living with blindness and visual 
impairments. Topics of discussion included daily living skills, educational experiences, employment issues, social skills, 
as well as orientation and mobility skills and transportation issues. The mentors were asked to share their experiences, 
both good and bad. Of course these topics overlapped some, but they gave a focus and starting place to the discus- 
sions. Parents spent fifteen minutes at each table learning how an individual lives his or her life with blindness or visual 
impairments. Although the group was too largeto share a lot of information in such a limited time, parents had the 
chance to meet all the mentors and hear a variety of experiences. The families made an initial connection with mentors 
and can keep in touch as they need to in the future. This activity was a great success. 

So what are the ten reasons to introduce blind mentors or role models to families? The reasons are evident in the 
families' comments: 

1 . "I learned that children should still be children and be treated as normal as possible." 

2. "My outlook has become more positive after listening to and speaking with the mentors. I'd previously 
thought assisted living would be the only option for my son, and I realize now the only future that is com- 
pletely closed to him is the one he doesn't try." 

3 . "I was very much inspired by the mentors and by seeing the success of other students with visual impairments." 

4. "I realized that there really are no limits. It's a matter of getting my child the exposure he needs to be able to 
have many options." 

5. "I enjoyed talking with the teens about social situations and independence. They calmed my fears about 
social interaction. I also learned a great deal about the value of incidental learning." 

6. "The best part of the weekend was being able to talk to other people who are having similar problems and 
find out how they are handling them." 

7. "I learned that kids with visual impairments can be successful... college graduates and business owners." 

8. "Now I believe my child can be anything she wants, and more." 

9. "The best part was meeting other parents and mentors and gaining support and information." 



Do these comments surprise you? They are the feelings that most parents want to have about their children with 
visual impairments. These parents do "get it" now. They heard real stories from real people living every day with 



blindness and visual impairments. The whole weekend was an uplifting experience for everyone. The mentors 
enjoyed meeting the families and sharing their stories as much as the families enjoyed listening and questioning. 

By the way, I didn't forget the tenth reason. 

10. Parent training is included in the law (See IDEA 300.24(b)(7)). Related services not only include things 
like orientation and mobility, physical therapy, occupational therapy and the like, but may also include 
recreational opportunities and parent training. State special education funds may be used for training of 
parents (300.3820)). 

Obviously, there are more than ten reasons to introduce families to blind mentors or role models. Many of you 
could add several more reasons to this list. Those of you who have regional family events please spread the word 
about the mutual benefits of involving mentors. Enlist a family member to write about their experience and take the 
opportunity to brag in this newsletter. These family/mentor events are worth doing. They promote partnerships 
between parents, professionals, and blind and visually impaired leaders in the community. They also give students a 
chance to understand the need for and to develop and practice lifelong skills that lead to independence. 



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Victoria's Eyes 

By Rene Gonzalez, Father, Kyle, Texas 

On December 17,1997, Victoria Loreen Gonzalez was born at 8:00 a.m. She was a beautiful baby full of life. 
During Victoria's first year she had spent a week in the hospital due to a urinary tract infection. She also had regular 
well-checks and visits to the doctor for immunization and sick visits. For us it was twelve months of happiness and total 
delight in our daughter. 

When she turned fifteen months old, she had a seizure caused by high fever. Three different baby doctors checked 
her. All of the doctors agreed that a simple rash had caused her temperature to rise quickly. Each doctor checked her 
eyes and other parts of her body for any abnormalities and assured us there were none. 

Time passed and Victoria was having the typical experiences of a child. We could see her strength and courage as 
she attempted to walk. Very soon she was getting into every part of our home. She played with others, and she enjoyed 
the outdoors. 



At about 20 months we took Victoria to the doctor for a wellness check. At that time we complained about her 
sleeping problems. She had begun to have sleeping problems and would cry. We would try to comfort her and relieve 
her distress, but nothing helped. Her pediatrician suggested her problems with sleeping were due to bad dreams or gas. 

Not long after that visit I spotted a strange metal-like reflection in her left eye. I asked others in our family if they 
saw the same cloud. Immediately I felt a need to cover her right eye. She refused to allow the right eye to be covered. 
I tried poking her left eye to observe her reaction. Her left eye stayed open as if she did not have any fear of being 
touched. Immediately we scheduled an appointment with the doctor. 

As we waited in the doctor's office, Victoria played and enjoyed herself. This time the doctor thoroughly checked 
her eyes; she turned off the light and closed the mini-blinds. I told the doctor that an object was only visible when 
Victoria's eyes were looking upward. The doctor started the procedure, then immediately rose from her seat and left 
the room. We were left alone, and a very cold silence fell around us as we stared into her precious little face. 



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The doctor returned with instructions for us to go to an ophthalmologist. It was 5 :45 p.m. on a Friday, and we were 
in the south part of Austin. Dr. Busse, the ophthalmologist we were referred to, had his office on the other side of town, 
about 45 minutes away in the heavy Friday rush-hour traffic. Before we left our pediatrician, we were only able to 
gather that she saw a growth in Victoria's eye. We found out later that in her many years of practice, she had never 
diagnosed a child with this type of growth. 

That drive from her office to Dr. Busse's began a journey of pain and suffering for both Victoria and us. The day 
seemed to go into a kind of slow motion. We sensed that a deep fissure had been opened in our life. The possibilities 
of what the doctor meant by "a growth" ran on a loop in our minds. The worst fear parents can have, that of something 
harming their child, was becoming a reality for us. 

Once we entered Dr. Busse's office, he immediately dilated Victoria's eyes three times. Victoria was beginning to 
show an impatience for all this new testing on her eyes. Suddenly we both noticed a large white globe in Victoria's left 
eye and smaller globes in her right eye. Dr. Busse stood up and left the room in haste. He returned with a handout and 
a box of tissue. He sat down and gave us the tissue box. He told us Victoria has cancer in both of her eyes, and we 
must work fast to save her. 

We were thrown once again into that loop of emotions, struggling with fear and sadness. At first I held strong trying 
to support my wife who at that moment was in total distress. Then I soon joined her in my own fear and sadness. 
Victoria was beginning to worry, and she became saddened by our reactions. We held her tight. We were so unsure 
what her future would be. We were faced with a huge decision to make and no time to ponder the options. 

Dr. Busse gave us the basics. The cancer Victoria had is called retinoblastoma. He told us that this form of cancer 
is very rare, very aggressive, and can be life threatening. He stated that the hospitals in Houston were very experienced 
in treating this form of cancer and that we must decide whether or not to begin treatment immediately. He also gave us 
a second option and that was to begin the early test here in Austin. The decision was difficult for us. We had to decide 
what was the best treatment for Victoria. We decided to stay in Austin because we had family and friends here while 
in Houston we knew no one. Dr. Busse made the arrangements with the children's hospital, and moments later we 
were on the road again heading into the unknown. 

As we traveled to the hospital with tears rolling down our faces, I felt like stopping the car, getting out, and 
screaming. I wanted to shout until everyone could hear, "My beautiful 22-month-old baby has cancer!" I knew, 
staring at the other cars as they passed by, that the people inside them had problems and troubles of their own. Still I 
felt that no child should have to endure such pain and suffering, especially not my beautiful daughter. How could my 
young baby girl have such a destructive disease? 

Now we entered the hospital, a place that would soon become our second home. We passed by the chapel, and 
we also passed by several other cancer patients. The first procedure they did on Victoria required an I V-line to be 
inserted into my baby's little veins. Victoria's blood had to be drawn continuously to monitor her red blood cell count. 
It took both of her parents, three nurses and a support board to hold Victoria down. As I held Victoria's head I stared 
into her lifeless left eye, and I could see the white growth in there. My tears were now mixing with Victoria's. Her pleas 
for help went unanswered, for we knew this was only the beginning. 

It was now 1 1 :00 p.m. Friday evening, and Victoria was being prepped for a series of X-rays. Once again she had 
to be held down by a support board underneath a huge X-ray machine. I could not imagine what Victoria felt, but as 
she pleaded for help, I knew she was asking why, and what had she done wrong? This procedure lasted an hour and 
then we were on another ride, this time to another hospital for an MRI. The MRI was required to make sure the cancer 
had not spread to the rest of her body. 



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The only break Victoria had was that she was put under because the test required complete stillness. The loud beat 
of the machine did not help the cold silence. By 3 :00 a.m. we were heading back to the first hospital. It seemed that 
the darkness of the night was no match to the darkness that had fallen on Victoria and on us. 

The next day began at 6:00 a.m. with more blood work and an early visit from Dr. Busse. He gave us some good 
news. The cancer was mainly engulfed within the eyeballs. Therefore complete removal of the eye would prevent any 
growth of cancer into the brain. Dr. Busse informed us that he was not a specialist in retinoblastoma, but that he had 
enlisted the services of another Austin doctor, Dr. Harper, who deals with this type of cancer.. Then Dr. Shore entered, 
who specializes in the removal of eyes and optic nerves, and implants. He was very professional and answered every 
question we had about the dangers of removing the eye. He doubted it was possible to save her eyesight. 

By 8 :00 a.m. both doctors had given us their opinion. Then the geneticist visited and questioned us about our family 
history. This information would help determine if the disease was genetic or just an unfortunate twist of fate. The 
genetic testing is also required for tracking the disease and to alert us to the possibility of cancer developing in our other 
child or within our families. Conclusive results from this testing would take several months. Before the next doctor 
entered, we were completely exhausted, emotionally drained, and hopeless. Our daughter who had only .seen a 
fraction of the world was now on the edge of being in complete darkness. There is no way I can describe our states of 
mind at this moment. We both so desperately felt we needed help. 

In a sense the next two doctors could be called miracle workers. Dr. Harper is a retina specialist, and Dr. Lockhart 
is an oncologist. Dr. Harper looked in Victoria's eyes and studied them as best he could. He said that the left eye 
would have to be removed because it was full of tumor, and Victoria had no vision in that eye. It would be safer to 
remove the eye and eliminate the possibility of metastasis. Dr. Harper then went on to explain that he could save 
Victoria's vision in her right eye. He said it with such confidence that we were at his mercy. Let me tell you, because 
of Dr. Harper's confidence, some of the sorrow and heartache was lifted from our hearts. (Thank you Dr. Harper.) 

Dr. Harper and Dr. Lockhart, armed with their research, told us they believed a nine- week series of chemotherapy 
would help slow the cancer down. That therapy, combined with using a laser and freezing, might let Dr. Harper save 
the right eye. They agreed that the left eye had to be removed immediately. 

It was now noon and we were back on a roller coaster of emotions, trying to make the best decision for our 
daughter. We knew the options. If she kept the left eye there was a stronger possibility the cancer would spread. 
Keeping the right eye also added to that risk. Still the whole idea of placing Victoria in complete darkness in just two 
days was too much to bear. On the other hand losing her altogether was our worst nightmare. After 48 hours without 
sleep, our bodies were showing the strain. During the night I entered into the chapel and prayed for the forgiveness of 
our sins and also for guidance and strength. 

Once they did the eye exam under anesthesia, Dr. Shore and Dr. Harper concluded that the tumor was so big in the 
left eye that it had enlarged the eye. That meant that the removal of the eye would cause severe pain, and a long healing 
process would be necessary before they could begin chemotherapy. That also meant the tumors on the right eye could 
continue to grow. 

At 5 :00 p.m. Monday evening Dr. Harper called us with a new twist. He had been doing a lot of research about 
new aggressive treatments for retinoblastoma and had called doctors all around the world to find out what new 
techniques they were using on this type of cancer. He had found another option for us. We could remove the eye now 
and wait for the chemotherapy or start chemotherapy now and removal the eye later. He felt that the best chance for 
Victoria was to start chemotherapy immediately and try to keep some of her sight. He went on to explain that 
chemotherapy would be the only way to slow the growth of the tumors on the right eye and would also shrink the 
inflamed tumor on her left eye. By 7:00 p.m. Monday, Victoria's first wave of chemotherapy began, and by 9:00 a.m. 

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Tuesday her first series of laser work had also begun. After a week of blood draws, X-rays, MRI scans and surgery 
to attach a portocatheter to Victoria's chest, we went home. 

By the end of October the physical demands of the chemotherapy were showing their effects on Victoria. She had 
lost a good portion of her straight light-brown hair. She had also lost five pounds. Two more laser and freezing 
treatments had been conducted. Also the first wave of chemotherapy had ended. She had no appetite, and she was 
very weak. Her immune system had caused her to continuously have a cold and a never-ending rash. 

Financially we were having a hard time, so we had to remove both children from day care. Luckily, my wife Judith's 
parents never left our side. If not for them our jobs, our faith, and our hope would have been washed away. 

November brought in the second wave of chemotherapy and another series of work on Victoria's eyes. By 
Thanksgiving her health had weakened more and all of her hair had fallen out. She now had a slight case of pneumonia 
and a herpes-like rash. Since she was receiving chemotherapy, there was very little antibiotics would do to help. The 
day before Thanksgiving the fever broke and the rash had cleared slightly. Victoria was rebounding. Before her last 
chemotherapy treatment her blood count had lowered to near the danger point, so she now required a blood transfu- 
sion. Her blood count had to improve before the final round of chemotherapy could be administered. I thank those 
people who give blood to help her because the change was immediate. 

By the end of the chemotherapy treatment she had gained weight and was back to enjoying just being a child. The 
rash and cold were still present, however, and again she experienced another fever seizure. The lost look in Victoria's 
eyes and the lack of strength in her body frightened us into believing that she would truly be lost. 

Yet eventually she stood up, and then there was no stopping her. She would celebrate her 2-year-old birthday, a 
day we thought would never be celebrated. With the help of family and friends, she once again would feel normal. Her 
life could be more than doctors and nurses. Soon she would also experience the ending of a century and the beginning 
of a new millennium. 

The beginning of the year came along with the day we had dreaded. Victoria's left eye would be removed on 
January 1 1 , 2000. After four hours of surgery, we waited two more hours for her to open her only remaining eye. 
When she awoke she was only troubled by the stitches that held her left eye shut. Otherwise, she went through surgery 
with a lot of courage. Several weeks later the stitches were removed and the prosthesis was inserted. 

Every three weeks from October 1 999 through October 2000, Dr. Harper has been working on Victoria's eye. 
Victoria's health is still weak. She often gets colds and rashes, but she plays like any other child. By October 2, 2000, 
after a year of lows and highs, our journey has led us to a straightway. The three tumors on her eye are in remission and 
are no longer growing. Although this does not end her torture, it does give strong support to her future. 

This story I have written began with strong and powerful emotions. It has been very hard for me to write about it, 
recalling all the things we have been through. It took me several days just to get down what happened that first day 
when she was diagnosed. As tears ran down my face and on to the page, it seemed that first day was happening again. 
For you see, we lost our first child six years prior to Victoria's diagnosis. It took us three years before we could think 
about having another child. Like a miracle, our first child was born six years into our marriage and we named him Elijah 
Jacob. When Victoria was born our family was complete. But when Victoria's cancer was diagnosed, all the old 
emotions of our first lost child returned. The only difference was that with Victoria we had a chance to fight for her life. 
Luckily for us, Victoria's will and courage would not let her give in to this destructive disease. 

The final thing I can say is that Victoria's loss was our gain. She lost her eye, but she gained love, hope, and faith 
from strangers, friends, doctors, and nurses. 

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Both my wife and I would like to encourage doctors in Texas to regularly use special screening procedures to help 
detect the presence of eye conditions such as retinoblastoma in infants and toddlers. In California there is currently 
legislation being considered that would change eye-screening protocols for children under the age of two. One of the 
main components of the new protocol is to dilate the eye for early examination, a very inexpensive procedure. 

Retinoblastoma is a childhood cancer and accounts for approximately 1 3% of all cancers in infants. Most children 
are diagnosed before two and one-half years of age. When retinoblastoma affects both eyes, the average age of 
diagnosis is 12 months. An abnormal screening will facilitate timely referral to an appropriately licensed health care 
provider and to an ophthalmologist for treatment. 

Early detection and referral of an abnormal red reflex pupillary screening would allow early diagnosis of congenital 
cataract or retinoblastoma which, if recognized and treated as soon as possible after birth, could reduce long-term 
disability. Early diagnosis and intervention might also reduce the number of visually impaired citizens. It could also cut 
down on the public's expenditures for health care, special education, and related services. Spending a little money 
early in the life of a baby could save so much in terms of dollars, but also in the pain and suffering of children and their 
families. We need to make sure children in Texas have the best health care possible. This protocol could save sight and lives. 



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The Patience of Justin 

By Cheri Scott, Parent and Family Specialist, Alaska Dual Sensory Impairment Services 

My husband Allan and I are parents of three kids: Heather Amy, who is 27 and has no apparent disabilities, Daniel, 
who is 22 with Attention Deficit Hyperactivity Disorder and Learning Disabilities, and Justin, who is 1 3 and has Fetal 
Alcohol Syndrome, Cerebral Palsy, Mental Retardation, Dual Sensory Impairment, and Seizure Disorder. 

Justin came into our lives as a foster baby when he was 5 months old. He'd been born at 26 weeks gestation 
weighing 2 lbs., 2 oz. and with a blood alcohol level over twice the legal limit for driving while intoxicated. It took him 
four days to "dry out" cold turkey. He had many complications during his 3 months in the Neonatal Intensive Care Unit 
(NICU) at Providence including a detached right retina, damage to the left retina, a grade 3 bleed that left him with 
significant brain damage, respiratory and cardiac problems and, at times, uncontrollable seizures. When he came to 
live with us we were told that he would probably not be a long-term survivor. If by chance he did live, he would be 
almost completely blind, able to see only light and dark contrast. Justin would need full-body support since he'd never 
be able to sit or stand by himself, and he would require round-the-clock care. 

There was no huge miracle that made him a perfectly developed typical boy. But for those of us lucky enough to be 
part of his life, we know that there have been countless small miracles built out of the hard work, faith, and persever- 
ance of many loving, dedicated people over the last thirteen years. The greatest credit goes to Justin for his patience, 
sweet disposition and positive nature. He waits for the rest of us to understand what needs to be done. He accepts our 
fumbling and mistakes as we search for the best ways to help him reach his potential. 

Currently, Justin is in 8th grade in an intensive needs classroom with aide-supported participation in regular educa- 
tion elective classes. He walks with forearm crutches, uses sign language, a small amount of speech, and an electronic 
voice output device to communicate. He reads at a 1 st-to-2nd-grade level and loves books. He wears hearing aids, 
with the addition of a wireless FM system when at school, and glasses to see anything farther than four feet away. He 
takes medication to keep his seizures under control and to reduce the spasticity in his legs. He also wears plastic 
orthotic braces on his feet and lower legs to help him walk and stand comfortably. 

Last year was busier than usual for Justin. He was selected as the Children's Miracle Network (CMN) Champion 
for Alaska. He represented Alaskan kids served by the Children's Hospital at Providence at fund-raisers around the 

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Anchorage community throughout the spring. In June, Justin took my husband, Allan, our other son, Dan, and me to 
Washington D.C. and Disney World for the National CMN Telethon. Justin's favorite part of the whole trip was 
Disney World's Blizzard Beach, where we spent the steamy hot day floating on inner tubes around and around the 
perimeter of the park. Other highlights included meeting Mickey Mouse, riding in a little jet boat with his big brother, 
and the electric light parade in Fantasyland ( three times!). 

Hadley School for the Blind selected one of Justin's original pictures for their Christmas card this year, the first time 
it has used a student's artwork. The card is being sold to help the school raise money to fund the correspondence 
programs it provides free of charge to individuals with vision impairment and their families. Willard Scott showed the 
card on the Today Show, and according to the folks at the school the demand for cards was very good. 

We're very proud of our son and all the great things he's been able to do in his life - with a little help from his friends. 

Our family's experience with Special Education Service Agency's (SESA) Alaska Dual Sensory Impairment Ser- 
vices began about two-and-one-half years ago when our son's hearing loss was confirmed at ten years of age. After 
years of incomplete hearing tests from audiologists untrained to work with children experiencing developmental and 
physical disabilities, I took to heart the words of the physician I work with, Dr. Brennan, and took Justin to experts. 
Three separate testing days confirmed our worst fears. After years of attributing his lack of speech to his other 
disabilities (Cerebral Palsy from a severe brain bleed at two weeks, following his premature birth at 26 weeks gesta- 
tion, and Fetal Alcohol Syndrome, Mental Retardation and Epilepsy), we were devastated by the diagnosis. 

I remember returning my son to his school and crying as I tried to share the audiologist's report. As we talked, 
Laura Metcalf, Justin's resource teacher, made the comment that his visual impairment may have been a blessing in 
disguise. To insure Justin could see our expressions we had always tried to stand close to him when speaking, using 
sign language as well, because he didn't seem to be picking up speech. Without the diagnosis of a hearing impairment 
we had no signing support from the school district. Each year, to the best of our own meager ability, we had to educate 
the new staff on communication techniques to use when working with him. We have been very lucky to have support- 
ive team members willing to follow our lead throughout most of Justin's school career. 

We were very late in receiving Justin's diagnosis of hearing impairment. No one can tell us how long he has had 
difficulty hearing. Recent studies noting the high percentage of hearing and vision problems in children with FAS, 
however, lead us to believe that he has probably been hearing impaired since birth. It is thought that this high percent- 
age of hearing and vision loss is related to the anatomical differences caused when the cells of the developing fetus 
come into contact with alcohol during the 1 9th-2 1 st days of gestation. This is the time when the structures that will 
become eyes, internal ear structures, upper palate and other mid-face features are forming. 

Speech therapists, physical therapists and occupational therapists have been some of our most important team 
members. Many of the professionals working with our family have had some training in FAS and have a general 
understanding of how children can be affected by prenatal alcohol exposure. As Justin's main advocates, it is our job 
to make sure they remember that each child with this disorder is unique and to keep reminding them of the specific 
ways our son is affected. 



Justin has a short attention span. Even when he is intensely interested in what is being presented, lights, movement 
and sounds from the surrounding area can easily distract him. Leg tremors related to his cerebral palsy can do the same thing. 

Justin has sensory and tactile defensiveness. For him this means he is sensitive to loud noise and busy visual 
environments. His response to too much sensory stimulation ranges from hysterical laughter progressing to tears, 
staring at bright lights and shaking his hand in front of his good eye, humming snatches of song over and over, or 
retreating to a quiet dark space like a darkened bathroom, bedroom or laundry room. 

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Justin is an experiential learner. To understand new things, he has to see, feel, hear and taste them. Abstract 
concepts are far beyond his understanding. If you say "See you later," he expects you to come visit before bedtime. 
"Wait a minute," means that when the seconds on his digital watch get to :00 it will be his turn. 

Justin has a processing delay. That means that after he reads, and especially after he hears new information, it takes 
time for his brain to understand the information and decide how to respond. This can take up to 20 seconds if a 
question is long or complex. It may seem to the person interacting with Justin that he is ignoring them or choosing not 
to respond to their question. This delay in responding may also be interpreted as a problem behavior. 

To compound things, people will quite often repeat or reframe their question, thinking that he didn't hear or under- 
stand them the first time they spoke. When that happens, Justin's mind shifts to the new statement and starts from the 
beginning again, like punching a button on the CD player to go back to the beginning of the song. 

For years, school staff members were frustrated when Justin seemed to shut down during conversation attempts. 
Yet he had no other way of dealing with the unending demands of conversations that he couldn't understand or respond 
to quickly. So he would resort to his favorite word, "NO," or flap his hand in front of his eye and gaze at the lights in 
the classroom. As Justin has matured and begun to gain a sense of control over his world, he has learned to use the 
pointy-finger-to-lips "SHHHHH" sign and sound when he's feeling like too much information is coming too fast. 

Justin is a wonderful boy with a sweet, patient temperament. He's also at high risk for being victimized. To Justin 
the term "friend" means anyone that makes eye contact, smiles or talks to him. Because of his vision, hearing and 
motor difficulties, as well as his lack of understanding of dangerous situations, he needs constant supervision when out 
in public. Things like making sure he's aware of curbs and sidewalk edges that could catch his crutch tips, navigating 
icy sidewalks, high snow berms, and traffic and dealing with loose dogs or predatory people need to be taken into account. 

As Justin matures, we (Justin and his family) will continue to be faced with challenges brought on by his disabilities. 
Still, we are definitely a part of our community, and Justin has many people who care about him. With his continued 
patience and the support of these community members, we feel optimistic that his life will be rich and full. We know 
that our lives are certainly richer and fuller for having him. 

Editor 's note: I met Cheri Scott this summer while I was in Minnesota attending the Hilton/ Perkins-NT AC 
sponsored workshops on Family Issues. During lunch one day, Cheri asked how many students were on the 
Texas Deqfblind Census with an etiology of Fetal A Icohol Syndrome (FA S) or Fetal A Icohol Effect (FAE). FAE 
is a lesser set of the same symptoms which make up FAS. Babies affected by alcohol can have any or all of 
these symptoms. FAS and FAE are widely under-diagnosed. Some experts believe that between one-third and 
two-thirds of all special education children have been irreversibly affected by alcohol in some way. At least 
5,000 infants are born each year with FAS; another 50,000 children show symptoms of FAE. 

As I talked more with Cheri about this etiology, I realized how important it is for us to be aware of children 
whose vision and hearing problems may be caused by this syndrome. These children are exceptionally hyper- 
sensitive or hypo-sensitive to sensory input. As a result, they may be likely to shut down in noisy or visually 
busy environments, or be very upset by sensory stimulation activities. When we are assessing these children s 
hearing and vision, especially functional assessments, we may not get responses quickly because of processing 
and response problems. It would be natural to assume they didn 't see or hear the test item, when in fact they 
might have. Inconclusive or inaccurate testing of their senses may be a real possibility if these factors aren 't 
taken into consideration. Hearing loss for these children can be sensorineural, conductive, a processing disor- 
der, or combination of all three. They may also have vestibular problems that affect balance. 



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Luckily, these children do benefit from many of the same instructional strategies and modifications that 
work for the child with deafblindness or visual impairment and developmental disabilities. Using instructional 
routines, teaching choice-making skills, and structured social skills development can help. Making adapta- 
tions for vision and hearing issues such as avoiding glare and bright lights, using appropriate assistive listening 
devices such as FM systems, having appropriate glasses, using color to add visual recognition, and so forth, 
can also be important. However, we need to carefully monitor the child's responses, talk to his caregivers (the 
real experts on his responses/needs), and assess, plan, and work together as a team to make sure the individual 
child s needs are being appropriately addressed. 

Many of these children will not grow up in their birth parents ' homes. Often, they may be raised in foster 
homes or with extended family members. It is our responsibility to make sure these caregivers have the infor- 
mation and support they need as well. 



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Children with Fetal Alcohol Syndrome have some very unique needs. As you will see in the article "Under- 
standing Issues with Fetal Alcohol Syndrome " by Blanche Stetler, there are some tried and true approaches that 
should be used with these kids. It is also important to note that some children with Fetal Alcohol Syndrome will 
not be diagnosed or identified as such. That makes our task as professionals serving these children and their 
caregivers all the more difficult. 

By the way, in Texas we have not identified any children with Fetal Alcohol Syndrome on the 2000 
Deajblind Census. Are we failing to identify these children as having FAS, or are we not identifying them as 
visually impaired or deafblind because of their other disabilities? 

Fetal Alcohol Syndrome 

By Blanche Stetler, Parent and Family Specialist, New Jersey Deafblind Project 



In September of 1 989 we adopted a little boy who we named Timmy. Timmy was 2 weeks old at the time, and, 
unbeknownst to us, was born to a mother who both drank and took drugs while she was pregnant. We found this out 
during a regular office visit to our pediatrician after our doctor had received Timmy 's birth records from the adoption 
agency. Since then, we have been on a roller coaster ride between doctors, therapists, and educational professionals 
trying to get him the help he needs. Tim has both a vision and hearing impairment caused by Fetal Alcohol Syndrome. 
He also has Attention Deficit Hyperactivity Disorder (ADHD) and a Seizure Disorder. Even though he is now 1 1 , 
developmental^ he is at 5-6 year-old level. We have tried many different medications over the years to control his 
hyperactivity and seizures. It is an ongoing battle. It seems whenever he has a growth spurt, the medications no longer 
work, and we go on to something else. 

Even though we knew Timmy 's birth history when we started visiting neurologists, it still took many years for us to 
get a firm diagnosis of Fetal Alcohol Syndrome (FAS). We have compiled the following information over the years to 
help us. Some things were from doctors and others were from teachers, therapists, professionals, books, and support 
groups. 



CHARACTERISTICS OF FETAL ALCOHOL SYNDROME 

Fetal Alcohol Syndrome is diagnosed when children meet the following criteria: 

1 . Growth deficiency, prenatal or postnatal, for weight, length or both. 

2. A specific pattern of minor anomalies that includes a characteristic face, generally defined as small eye slits, a 
flat mid-face, a short upturned nose, a smooth or long philtrum (the ridges running between the nose and the 
lips) and a thin upper lip. 

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3. Some neurological damage, including small brain size, tremors, hyperactivity, fine or gross motor problems, 
attention deficits, learning disabilities, intellectual or cognitive delays, hearing or vision deficiencies. 

4. A diagnosis of FAS also requires some presumed history of prenatal alcohol exposure. 

Many FAS children: 

• Have difficulty structuring work time. 

• Show impaired rates of learning. 

• Experience poor memory. 

• Have trouble generalizing behaviors and information. 

• Act impulsively. 

• Exhibit reduced attention span or are distractible. 

• Display fearlessness and are unresponsive to verbal cautions. 

• Demonstrate poor social j udgment. 

• Cannot handle money age-appropriately. 

• Have trouble internalizing modeled behaviors. 

• May have differences in sensory awareness (hypo- or hyper-). 

• Show poor problem solving strategies. 

Children with FAS also have an increased occurrence of other physical problems that can be traced to their 
prenatal alcohol exposure, and can contribute to their overall disability. Additional eye anomalies can include ptosis 
(drooping eyelid), strabismus (deviation of the eye), and myopia (nearsightedness), as well as underdevelopment of the 
optic nerve, twisted retinal vessels and blindness. The high occurrence of hearing disorders in children with FAS is 
associated with alcohol induced developmental delays. Types of hearing loss may include sensorineural hearing loss 
and central auditory processing disorders associated with abnormalities of the brain stem. Misshapen secondary teeth 
are also common in these children. 

EFFECTIVE STRATEGIES FOR HELPING THE FAS CHILD 

Foster independence in self-help and play. 

Give your child choices and encourage decision-making. 

Focus on teaching daily living skills. 

Avoid situations where your child will be over-stimulated. 

Have your child get ready for the next school day before going to bed. 

Establish routines so your child can predict upcoming events. 

Give your child lots of advance warning when a planned or usual activity is going to change to a different activity. 

Break your child's work down into small pieces so he/she does not feel overwhelmed. 

Set limits and follow them consistently. 



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RESOURCES TO LEARN MORE ABOUT FAS 

It is always a safe bet to begin your information search for any syndrome or condition with FamilyVillage. For their 
listing on FAS go to <http://www.familyvillage.wisc.edu/lib_fas.htm>. Here are three excellent resources listed at 
Family Village: 

National Organization on Fetal Alcohol Syndrome 

216 G Street North East 

Washington, DC 20002 

Phone: (202)785-4585; Fax: (202)466-6456 

E-mail: information@nofas.org 

Website: <www.nofas.org> 

This is an excellent website for a variety of articles on FAS, including teaching strategies, tips for parents and much more. 

Fetal Alcohol Education Program (FAEP) 

Boston University School of Medicine 

1975 Main Street 

Concord, MA 01 742 

Phone: (978)369-7713; Fax: (978)287-4993 

The Fetal Alcohol Education Program is dedicated to research and education for the prevention, identification and 
treatment of alcohol-related neurodevelopmental disorders. Among their materials available for sale are two teaching 
packages, one for education professionals entitled Alcohol, Drugs, and the Fetus: A Teaching Package (84 slides, 
a 65-page manual) and Here 's to Healthy Babies for the education of parents and community groups (call or write for 
details). They have also developed a handbook for parents, FAS: Parent and Child ($7 .50 per single copy; bulk 
rates available), and make a reprint list available. 

Family Empowerment Network: Supporting Families affected by FAS/FAE 

6 1 Langdon Street 

Room 523 

Madison, Wl 53703-1 195 

Phone: (800) 462-5254 or (608) 262-6590; Fax: (608)265-2329 

E-mail: fen@mail.dcs.wisc.edu 

Family Empowerment Network (FEN): Supporting Families Affected by Fetal Alcohol Syndrome and Fetal 
Alcohol Effects is an international organization serving families and professionals. They provide: free informational 
packets on FAS/FAE; international resource/referral directory catalogued by state/province; quarterly newsletter, The 
FEN Pen; extensive loan library (videos, audio training tapes, books, fact sheets, etc.); trainings for parents and 
professionals; educational opportunities; an annual retreat for families; and an annual national conference. FEN is a 
program of the University of Wisconsin-Madison, Department of Professional Development and Applied Studies. 



Some other nice resources suggested by Cheri Scott include: 

Fetal Alcohol Syndrome: A Guide for Families and Communities. Steissguth, Ann Ph.D. (1997). 
Published by Paul 1 1. Brookes Publishing Co; (800) 638-3775; Stock No. 2835; Cost: $22.95. 

Fetal alcohol syndrome: craniofacial and central nervous system manifestations. American Journal of 
Medical Genetics 6 1 :329-339, 1 996. 

Fetal alcohol syndrome and fetal alcohol effects, produced by Fronske Health Center, Northern 
Arizona University for the N AU website. Go to <http://www.nau.edu/~fronske/fas.html>. 

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Fetal alcohol syndrome, from the Roots and Wings Adoption Magazine. Available on the Roots and 
Wings website at <http://www.adopting.org/rwfas.html>. 

Fundus morphology assessed by digital image analysis in children with fetal alcohol syndrome. Hellstrom, 
Ann, Chen, Yahua, and Stromland, Kerstin. Journal of Pediatric Ophthalmology and Strabismus , 
January/February 1 997, Vol. 34, No. 1 . 

Hearing, speech, language, and vestibular disorders in the fetal alcohol syndrome: a literature review. 
Church, Michael W. and Kaltenback, James A. Alcoholism: Clinical and Experimental Research, Vol. 
21, No. 3, May 1997. 



What is Fetal Alcohol Syndrome? 

Reprinted with permission from the 

National Organization on Fetal Alcohol Syndrome (NOFAS) 

website <http ://www. nofas . org/what. htm> 

Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE) refer to a group of physical and mental birth 
defects resulting from a woman's drinking alcohol during pregnancy. FAS is the leading known cause of mental 
retardation. Other symptoms can include organ dysfunction, growth deficiencies before and after birth, central nervous 
dysfunction resulting in learning disabilities and lower IQ, and physical malformities in the face and cranial areas. In 
addition, children may experience behavioral and mental problems, which progress into adulthood. 

• FAE is a lesser set of the same symptoms, which make up FAS. Babies affected by alcohol can have any or 
all of these symptoms. FAS and FAE are widely under-diagnosed. Some experts believe that between 1 /3 
and 2/3 of all special education children have been irreversibly affected by alcohol in some way. 

• No amount of alcohol consumption during pregnancy is known to be safe. 

• FAS is the leading known cause of mental retardation, surpassing both Spina Bifida and Down's Syndrome. 
{Journal of the American Medical Association, 1 99 1 ) 

• At least one of every five pregnant women uses alcohol and/or other drugs. {Substance Abuse and the 
American Woman, Center on Addiction and Substance Abuse, Columbia University, June 5, 1 996) 

• Alcohol produces by far the most serious neurobehavioral effects in the fetus when compared to other drugs 
including heroin, cocaine and marijuana. Annual cost estimates for FAS and related conditions in the United 
States range from $75 million to $9.7 billion. {Fetal Alcohol Syndrome: Diagnosis, Epidemiology, 
Prevention and Treatment, Institute of Medicine, 1 996) 

• The Centers for Disease Control and Prevention reported a sixfold increase in the percentage of babies born 
with FAS over the past fifteen years. Since the Centers began tracking FAS, the rate has increased from 1 
case per 10,000 live births in 1979 to 6.7 cases per 10,000 live births in 1993. {The New York Times, April 
7, 1995) 

• Over three times as many women used alcohol during pregnancy than used illegal drugs. (National Institute 
on Drug Abuse, 1 994) 

• Each year more than 5,000 are born with FAS and nearly 50,000 babies are born with Fetal Alcohol Effects 
(FAE), a condition characterized by symptoms similar to but less severe than FAS. {Public Health Educa- 
tion Information Sheet, March of Dimes, 1992) 



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o 
z 

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17 



— 



Fewer that 57% of Americans under the age of 45 have even heard of FAS. Of those, less than 25% can 
correctly identify it as a set of birth defects while the rest think it means being born intoxicated or addicted to 
alcohol. (National Health Interview Survey, U.S. Department of Health and Human Services, 1 985) 

An average of one to two reported drinks per day has been linked to decreased birth-weight, growth 
abnormalities and behavioral problems. (Alcohol Problems in Women, 1984) 

The probability of having a child with FAS increases with the amount and frequency of alcohol consumed. 
Whenever a pregnant woman stops drinking, she reduces the risk of having a baby with FAS. (Alcohol 
Health and Research World, The National Institute on Alcohol Abuse and Alcoholism, 1995) 

The latest estimate for the U.S. is a rate of 1 9.5 per 1 0,000 live births, although estimates run as high as 30 
per 1 0,000 - about 1 2,000 babies a year. (Substance Abuse and the American Woman, Center on Addic- 
tion and Substance Abuse, Columbia University, June 5, 1 996) 

A 1 00% misdiagnosis rate was reported in a Houston hospital study of 48 newborns known to have alco- 
holic mothers. By age one, 6 of the infants had significant signs of FAS but none had been diagnosed at birth. 
(Little, Bertis, Snell, Laura, 1990) 

A federally funded study in four U.S. Southern communities found that only 65% of women were asked by a 
physician or nurse about alcohol or drug use during their most recent pregnancy. Further, although most of 
the women who were asked acknowledged substance abuse, only 3% were referred to treatment. (Shelly 
Geshan, Southern Regional Project on Infant Mortality, 1 993) 

A national panel convened by the Josiah Macy Jr. Foundation found that most doctors do not even try to 
identify problems by asking patients questions about alcohol and drug habits, and do not know how to 
respond if they do find evidence of dependency. The panel called for an increase in mandatory training on 
substance abuse for medical residents as the first step toward improving treatment. (The New York Times, 
February 14, 1996) 

A National Center for Health Statistics study found that doctors appear less likely to tell black women to 
quit drinking and smoking during pregnancy than they are to tell white women. Pregnant black women were 
30% more likely than white women to report that they had never been told to quit drinking, and 20% more 
likely to report that they had not been told to quit smoking. (The New York Times, January 19, 1994) 



It's Almost Time 
for the 2001 Texas Deafblind Census 

This is a reminder to parents and professionals about the 200 1 Texas Deafblind Census. Each year in Texas and 
around the country all school-aged children with combined vision and hearing loss are included on a special registry, the 
Federal Deafblind Census. This information is used to identify both the numbers and needs of children in this country 
who have unique educational issues resulting from combined vision and hearing loss or deafblindness. It also plays a 
role in determining grant funds that each state receives to help these children, their families and the professionals 
working with them. In Texas, these funds flow through the Texas Education Agency to Texas Deafblind Outreach and 
the Texas Deafblind Census. The funds help families, professionals and paraprofessionals attend workshops and 
conferences, support the production costs of SEE/HEAR, and many other things. A child with a mild vision loss and/ 
or a mild hearing loss may be eligible for inclusion in this count. While the census is compiled only once ayear, children 
may be added to the census at any time. If you know of children who should be added on the Census, begin the 
process to get them on there now. For help in determining if your student is eligible, contact your ESC Deafblind 
Specialist, the Texas Deafblind Census, or Texas Deafblind Outreach. Parents, if you are not sure if your child should 
be listed on the census, ask your school IEP team to check with these resources. 

18 



Disabled Find Many Barriers Online 

By Andrew Park, Staff Reporter, Austin American Statesman 
Copyrighted material reprinted with permission from The Austin American Statesman 
Originally published in the Sunday, September 3, 2000 issue of The Austin American Statesman 

Tired of having to squint to read the display of his small green computer screen, Guido Corona one day replaced it 
with a 1 9-inch television. When text on the edges blurred beyond recognition, he pulled a cardboard box over his head 
and the monitor to block out extraneous light. When light seeped in anyway, he lined the makeshift hood with black 
paper to cover the cracks. When he found himself squinting again, he rigged his computer to talk to him and sound- 
proofed his office so colleagues wouldn't be bothered by the noise. 

It was 1 984 and Corona, a programmer in the research labs of IBM Corporation, was losing his eyesight to retinitis 
pigmentosa, a degenerative disorder that can lay dormant for half a lifetime and then turn a sighted person blind within 
a matter of months. Elsewhere within IBM, blind programmers were rigging printers with rubber bands and coat 
hangers to get them to print Braille and going back to primitive punch card sorters that could be read by their hands. 
They knew - even in the early days of the personal computer - that a technological revolution was coming and they 
didn't want to be left behind. 

Today, PCs can be custom-made for the visually impaired, and a whole industry has grown up to develop technolo- 
gies to help people with disabilities. But that doesn't always make them useful to folks like Guido Corona, because 
much of the Internet - which has become so important in American life that it increasingly separates the haves from the 
have-nots - remains inaccessible to people with disabilities. They struggle every day to find their way through complex 
Web pages that are clogged with animation, video and data that would fill reams of paper but are void of any accom- 
modation for their needs. 

Ten years after the passage of the Americans with Disabilities Act, which forced corporations and governments to 
address the needs of people with disabilities in the physical world, advocates are focusing attention on the barriers in 
the virtual world. It is another digital divide, and if you think the issue is simply the ability to shop online, think again. At 
some point, the Internet will be the platform for learning, working and participating in society. Texas is pushing hard to 
adopt electronic textbooks in public schools, for example, but they will be of little value if students with disabilities 
cannot use them. 

"To the extent that the world is moving to the Internet, it ups the ante that we have to be there or we cease being 
competitive," says Curtis Chong, director of technology for the National Federation of the Blind in Washington. 
"We've always said that blind people can be competitive. But being competitive can be tough to do if the technology 
is moving too fast for you to keep up with." 

FIGHTING FOR ACCESS 

According to a study released in March by researchers at the University of California-San Francisco, less than 1 
percent of people with disabilities regularly use the Internet, versus nearly forty percent of people with no disabilities. 

In the past two years, major computer and software makers have decreed that their products will be built with 
accessibility for everyone in mind, from people who can't use a mouse to those who can't hear the computer's beeps 
and whistles. But the needs of people with disabilities still get trampled under the rush to expand the Internet and use 
it to transform all aspects of American life, from business to government to education. 

"Ninety percent of the Internet pages have some problem with accessibility," says Kelly Ford, a Portland, Ore., 



19 



consultant who teaches web design to corporations and is one of the more outspoken advocates of building accessibil- 
ity. "Inaccessible information is just as much a barrier as a set of steps is to a person in a wheelchair." 

After years of pushing technology companies behind the scenes to improve the accessibility of their products, the 
fight is becoming public. In the past year, advocates for people with visual impairments have sued major corporations 
including Bank of America, H&R Block and Intuit, claiming the companies' popular software and Web sites aren't 
compatible with the screen-reading technology they use to surf the Web. They charged that Internet services such as 
online shopping, banking and tax preparation constitute public accommodations that, under the ADA, have to be as 
accessible to people with disabilities as the public library or the mall. 

America Online recently settled a suit by agreeing to make future versions of its Internet service software accessible 
to screen readers and other technology that people with disabilities use. The Department of Justice ruled in 1996 that 
the ADA applied to the Internet, and the government is adopting rules requiring accessibility in all technology it buys. 
The rules are expected to encourage state and local governments as well as the private sector to pay more attention to 
the issue. 



But it remains to be seen whether corporate policies and government regulations can keep up with the explosive 
growth of the Internet. New elements are added every day to Websites, often without regard to how different viewers 
might experience them. The emergence of affordable high-bandwidth connections such as cable modems and DSL 
has encouraged Web designers to create sites with complex features like streaming audio and video, animation and 
built-in, executable programs - elements that even many people without disabilities have trouble using. 

"I think as the Web continues to grow, it gets more inaccessible," says Jim Allan, information technology director at 
the Texas School for the Blind and Visually Impaired. 

With the advent of each new potentially world-changing Internet application — telecommuting, distance learning, 
online voting, digital signatures, e-books — people with disabilities question whether they will be able to take advan- 
tage, too. 

"Every new thing that comes along, the first thing that I do is worry," Chong says, "I will say that most of my worry 
has been justified." 

SCREEN-READER SUCCESS 

Guido Corona is not alone at IBM, and was not when he joined in the early 1 980s. Long before the Web existed, 
computing's emphasis on the visual caused problems with blindness and other disabilities, forcing them to improvise. 
Each time such improvisations failed him, Corona cursed his :tate-of-the-art computer and blamed technology, even 
though he knew it was his vision that was reaching obsolescence. 

"It was me, my eyes that were going the way of the Edsel or dodos," says Corona, 47, his eyes hidden by mirrored 
sunglasses more suited to a Texas state trooper than a computer programmer. 

As he continued to struggle, Corona learned that an IBM researcher named James Thatcher was developing a 
program that, when combined with a speech synthesizer, could read text aloud from a PC screen. 

"That was really a very important thing for the blind community, because it opened up jobs that wouldn't be 
available to them," says Thatcher, who retired from IBM in April. 

Corona jumped at the chance to be one of the early testers of the product - called PC-SAID - beginning a long 

20 



association with Thatcher that culminated in 1 996, when IBM moved its Special Needs System group, which was 
charged with bringing all of the company's efforts in developing computing for people with disabilities, to Austin. 
Corona, then working in Toronto, soon followed. By the early 1 990's, millions of people were logging onto e-mail and 
a text-based Internet through services such as AOL and Prodigy, including many blind people who used screen- 
reading programs. With the invention of the Web browser, though, developers were able to format text into boxes and 
columns and add logos, charts, photographs, and drawings and the Internet began to evolve into a much more graphic 
environment 

Once again, people with disabilities were left behind. Not only did the emphasis on spectacular graphics mean that 
visually impaired people using screen readers were stymied; the growing emphasis on the mouse as a tool for navigating 
the visual world of the Internet also meant that many people with mobility problems would be left out. 

"In 1 997, 1 was essentially refusing to recognize it because it was truly becoming a schizophrenic experience," 
Corona says. "There were less and less places that you could go to." 

About the same time in a laboratory in Tokyo, an IBM researcher was programming a screen reader that would 
recognize not just conventional text, but also the tags in HTML that control where text is displayed, its appearance and 
its function on Web pages. The program, called Home Page Pleader, offered the visually impaired user signals to how 
a Web page was laid out and how to navigate it. Thatcher's group brought the software to the United States and 
released a second version last year. 

Home Page Reader - and programs like it from assistive-technology companies such as Henter-Joyce Inc. - rely on 
web developers to include text alternatives to graphic elements as they are programming their pages. It is an easy step 
in designing a page, but one many programmers overlook. 

"When the issue of accessibility comes up, that's not the number one priority. The number one priority is to have a 
nice-looking product," says Adam Weinroth, a Web developer at Mediatruck Inc. in Austin, whose team won first 
place in a contest last fall in which local design firms created accessible Web sites for nonprofit organizations. "Now 
it's to the point where people are potentially missing out on customers or missing out on revenue because of it." 



Indeed, people with disabilities are increasingly looked upon by corporations as a lucrative market, and their 
combined buying power of $300 billion is only expected to grow as baby boomers age. 

But change is not easy. Advocates bring inaccessible sites to the attention of the companies that run them, and their 
recent targets have been some of the biggest names on the Web: Dell Computer, Citibank, Priceline. After becoming 
a faithful customer ofHomeGrocer.com, Kelly Ford complained when the site was redesigned and its accessible 
features were dropped. The Seattle company made the appropriate changes, but it was later sold to another company 
whose online grocery site is not accessible. 

And sites that target a wide audience have been embarrassed when they have failed accessibility tests. The Bush 
for President campaign recently relaunched its site, only to read in the media that it didn't meet accessibility standards. 

Last spring, people found that the ballots for the online primary held in Arizona were inaccessible; voting buttons 
were not labeled with text alternatives. As with Ford's experience with online grocery shopping, people with disabili- 
ties were denied a chance to do something they struggle with in the physical world. 

"It was the one time that people who are blind could have had complete independence when voting at the polls, 
and they blew it," said Cynthia Waddell, who helped the city of San Jose become the first major municipality to address 
the accessibility of its Web sites. 

21 



' 



CHANGE COMES SLOWLY 

Not everyone agrees that Web sites should be required to include the kind of clues that Home Page Reader and 
other screen recognition software can use. At a hearing in February, a House subcommittee heard testimony whether 
the Internet was a "public accommodation" as defined by the ADA, and much of the testimony was against the idea. 

"It would be hard to find a better way to curb the currently explosive upsurge to this new publishing and commercial 
medium than to menace private actors with liability if they publish pages that fail to live up to some expert body's idea 
of accessibility in site design," Walter Olsen, a senior fellow at the conservative Manhattan Institute, told the House 
Judiciary Subcommittee on the Constitution. 

And many who call for better accessibility favor encouraging more enlightened design, rather than forcing it. Gregg 
Vanderheiden, director of the Trace Research and Development Center at the University of Wisconsin at Madison, and 
others, speak of a future which "universal design" allows all people to access Internet content, no matter what their 
capabilities are or what type of device they are using. Rather than build sites that use only text or that have separate 
sites for people with disabilities, they advocate designing sites that transform gracefully, recognizing the special needs of 
the user as soon as they load onto the screen. And despite the effort IBM has made promoting Home Page Reader, the 
special-needs group remains a bit player in the corporations cast - only 1 7 employees out of a work force of more than 
300,000. Only in the past three years has the company bothered to file for patents on technologies for people with 
disabilities, and despite a company-wide directive last year that all IBM products and Web sites must be accessible, 
Chairman Louis Gerstner has not talked publicly about the need for the industry to follow suit. 




















% 




a. 



Like IBM, Microsoft has widely advertised its accessibility effort, but it employs just 50 people and has been active 
since 1 998. Before then, the company did not work with developers of accessibility software, so blind users had to 
wait nine months before being able to work with accessible versions of new systems such as Windows 95. 

"It's very easy for our products to get lost because we have very small volume and there are many other very 
important products in which we get lost," IBM's Thatcher says. "It's hard for IBM to sell so few products." 

For Guido Corona, Home Page Reader has been a godsend, and he is back to being an Internet evangelist. Many 
sites still confound him, but most weeks, he spends hours searching the Web for news, the latest price of IBM stock, 
downloadable books and music, and stories about science. On his desk at home there are books by Tom Clancy and 
Thomas Mann he has scanned into his computer to be read back to him later. 

In the 1 9th century, when the masses were learning to read, the divide between the blind and the sighted populations 
widened. Those who could read suddenly had access to information about the world, while the blind had to rely on 
hearsay. Later, they could listen to radio and television, and Braille texts and recorded books helped. But none of it 
was available widely enough or quickly enough to provide access to information. 

"Now with the explosion of information on the Internet, that gap becomes even greater because the amount of 
information out there is growing exponentially, but the blind population will start with the same methods," Corona says. 
"So when the Internet becomes all of a sudden accessible, it's truly opening the floodgate of knowledge, of information, 
of self-worth, of education, of being part of this global village. And that is awesome." 

Editor 's note: If Guido Corona s name sounds familiar to some of you there s a good reason. He was the 
keynote speaker at the July 2000 Summer Technology Institute held in Austin. 



22 



Tips for New VI Teachers 

By Nancy Toelle, Coordinator, Quality Programs for Students with Visual Impairments 
and Ann Rash, Teacher Trainer, TSBVI, VI Outreach 

This article is the first in a series based on a session presented at the "Helen Called Her Teacher" conference 
sponsored by Texas School for the Blind and Visually Impaired (TSBVI). It is intended to help new teachers look at 
the components of service delivery to meet the unique needs of students with visual impairments. The concerns stated 
below are a representative sample of those expressed by new and not-so-new teachers. 

This article addresses the issue of how a new teacher determines how his or her school day is to be spent. The fact 
that this is a pressing issue can be appreciated when hearing the comments of new teachers, who say they are working 
night and day to meet the needs of students, staff, and parents. 

HOW MUCH AND WHAT KIND OF VI SERVICE 
Concern: 

How much and what kind of VI service is indicated in your student's IEP? 

Suggestions: 

This is a good time to start compiling a "teacher file" on your students that will help you keep track of a lot of 
important information. You may find it helpful to start a notebook or fact sheet on each student. This will become your 
"travel" notebook or file. Your preference for a notebook or a portable file holder will determine your final product. 

Find yourself a comfortable spot, take a few of your student's eligibility folders, and go through their most recent 
IEP paperwork, looking for the pages indicating the amount of service to be provided by everyone to the child. Also 
gather together all IEP forms, so you will have a good idea of what the child's total program will be. Please note: a 
best practice that we are encountering more and more is to find integrated IEPs that have been developed by 
a student s multidisciplinary team. When looking at IEP goals and objectives, look for those with a visual, tactual, 
or auditory component. Any of these could be the responsibility of the VI teacher (to provide direct instruction, 
materials, consultation, etc.). Look on the signature page for the name of the VI teacher involved in developing the 
IEP; he/she may be able to offer insights into how the IEP was developed. As you gather information on each student, 
devise a form on which you could keep needed information on all your students, such as date of birth, home address 
and phone number, campus and teacher name. Remember this is for your use and does not have to be elaborate or 
computer generated; a plain piece of paper divided into sections works just fine. This will be handy for contacting 
parents and teachers when you don't have the student's folder with you. 

MAKING A CHANGE 

Concern: 

If you were not a member of the IEP Committee that made the recommendation for this amount of time, and you 
feel a change is needed, do you know your options to make a change? 

Suggestion: 

The first and best option is to get to know the student and the program he/she is attending. One of the most 
practical approaches is to use a student-appropriate objective standard as you observe and work with the student. 
For example, use a pre-reading checklist for a young, academically able child or an observation checklist of critical 
features of effective programming for students with multiple impairments. (These instruments, and others, can be found 
in the TSBVI Assessment KIT and in the RSPI, Regional Student Performance Indicators.) 

23 






Be aware, this takes time. If you are scheduled to see a student only a small amount of time, such as a half-hour per 
month, you will not have enough time to really get to know the student. Since you can't be of much help to anyone if 
you don't know the student, it's important that you find a way to spend more time with him/her. Remember, taking this 
time is not prohibited by the IEP Committee. If, after getting to know the student, you feel more instructional or 
consultation time.is needed, an IEP committee meeting will be necessary to make that change. 

On the other hand, after spending some time with the student in his/her program you may feel too much time has 
been allowed for you to work with him/her. Before proposing changes to the IEP team, you should find some way to 
objectively measure student need that substantiates your thinking. It will then be a decision of the IEP committee to 
make a change in the amount of services. 

SCHEDULING TIME 
Concern: 

How do I address scheduling time to better meet my student's needs in an IEP meeting? 

Suggestion: 

You may be flexible in the way you schedule time with the student. For example, a "best practice" goal for a 
student with visual and multiple impairments would be to observe the student in every environment and activity that he/ 
she is engaged in throughout the school day. This would necessitate several visits at different times of the day to 
observe the student's program and determine VI specific needs. (Is the occupational therapist using a spoon the child 
can see, and presenting it at an appropriate distance and in his/her field of vision?) If the team is writing activity 
routines, you need to join the team with VI specific suggestions. If the team has never written an activity routine, it is 
your responsibility to initiate this important programming. If IEP specified time for this child is described in the IEP 
document as "twelve hours during the first twelve weeks of school and four hours per month thereafter" you could be 
flexible about your scheduling. You could spend longer chunks of time getting to know the student. If necessary, you 
could make multiple visits during the course of the week to his/her service providers to work as a team. Once things 
are running smoothly, the student and staff may need you can settle into a more regular schedule each week. The 
amount of time meets the IEP requirement,and the flexible scheduling allow you better to meet the needs of the child 
and the team. This approach may also be needed with your low vision or blind students who are academically able. 

If this approach seems overwhelming, we suggest you try it with just one student. It won't be long before you , your 
student, and the team start to experience the benefits. 

PRINT AND/OR PERSONNEL RESOURCES 
Concern: 

Do you have print and/or personnel resources readily available to you? 

Suggestion: 

The first step is to become familiar with what your district has to offer. Go looking for the VI materials stashed away 
in schools, or the nooks and crannies around the district. Next call your education service center VI Consultant and 
ask for help. In the meantime, some of our favorites are: The Perkins Activity Guide, Beginning with Braille by 
Anna Swenson, APH Bright Sights Kit and Work Play Trays, the Every Move Counts multi-sensory assessment, 
the Internet (including TSBVI's website <www.tsbvi.edu>) and materials available through the TSBVI curriculum 
department such as the Learning Media Assessment and the red Low Vision book (listed on the TSBVI website). 
You can probably access the Internet in your school library. 



24 



TIME TO PLAN LESSONS 
Concern: 

Do you make the time in your schedule to plan lessons with VI materials and resources? 

Suggestion: 

First, we acknowledge the fact that as itinerants we have little time, if any, set aside to plan. What time we have to 
spend in the office (if we have one) is often spent writing reports, record keeping, making or returning phone calls, or 
fighting fires. Without time to plan properly, lessons are never really meaningful, sequential, and building toward 
acquisition of the key skills needed. The teacher's anxiety level goes up and satisfaction with the job goes down. We 
suggest that as you develop your schedule, write in time to plan your instruction and to prepare for it as well. AND 
don't forget to eat lunch. 

We hope that we've addressed at least some of the concerns that you, as new teacher, may have. We would love 
to hear from VI teachers who have their own suggestions. For a thought provoking article on a related topic, read 
"Observation: The Other Four-Fifths of the Day," from the Winter 1999 issue of SEE/HEAR. Find it in the SEE/ 
HEAR Newsletter Index on the TSBVI website. Until the next time, we hope you can feel good about helping all your 
students, that you manage to make it to all your schools, and that there are no flats or other road mishaps in your future. 

In our next article we will try to give suggestions that address the concern: Do you feel comfortable deciding what 
to do with your students? If you have specific concerns related to this topic that you would like us to address, please 
feel free to contact Ann Rash by phone at (5 1 2) 206-9224, or e-mail her at AnnRash@tsbvi.edu. 



Educational Services in Texas for Children 
with Visual Impairments and Deafblindness 

By Cyral Miller, Director of Outreach 
and Kate Moss, Family Support Specialist, TSBVI, Texas Deafblind Outreach 

Texas parents are often confused about the range and type of educational services available to their school-aged 
children with visual impairments or deafblindness. It can be hard to advocate effectively without a full understanding of 
service delivery options. 

On his/her 3rd birthday, services for a child with visual impairments or deafblindness move from an ECI program to 
the local school district. At this time the Individualized Family Services Plan (IFSP) that addressed the needs of the 
child and the family is no longer used. Instead an Individualized Educational Plan (IEP) is developed by a team made 
up of the parent, professionals and (when appropriate) the child. The focus is no longer on the family and child as 
strongly, but rather focuses more on the child's educational programming. This team is mandated by federal and state 
law to assess the child's performance and determine appropriate services for provision of a free, appropriate public 
education that addresses the specific needs related to his/her visual impairment/deafblindness. Services may be pro- 
vided in a regular classroom setting, a self-contained setting, resource classroom, residential setting (such as Texas 
School for the Blind and Visually Impaired or Texas School for the Deaf), or in a combination of settings. Children with 
chronic health conditions may need to be served at home. A physician must recommend the need for these services. 

LOCAL INDEPENDENT SCHOOL DISTRICTS (ISD) 

Please check with your local ISD for web addresses, or you can search the Texas Education Agency website 
<www.tea.tx.state.us>. 

25 






r 



Services for students with visual impairment are most often provided by a local district or a special education coop 
which hires teachers with specialized credentials. Typically this means that an itinerant (traveling), vision teacher will 
travel from school to school to work with the student and/or his/her educational team. The types of services provided 
by the Teacher of the Visually Impaired include: 

• Completing a Functional Vision Evaluation (FVE) and a Learning Media Assessment (LMA) 

• Assisting the team in appropriate adaptation of all assessment materials and techniques to address the child's 
vision impairment 

• Attending all IEP meetings 

• Planning with the team to develop appropriate IEP goals and modifications that address the sensory impair- 
ment (the expanded core curriculum) 

• Providing direct and consultative services to the child and team members to support general instruction (assist 
in developing routines, providing Braille or large print materials, etc.) 

• Providing direct instruction to the child in specific areas such as braille, daily living skills, vocational planning, 
instruction in visual efficiency, vision-specific technology adaptations, etc. 

Services will also often be recommended from an Orientation and Mobility Specialist who can provide instruction 
in safe and effective movement and travel skills. 

Services for the child with deafblindness should also come from a Teacher of the Deaf and Hearing Impaired. This 
teacher may work directly for the local district or he/she may work for the Regional Day School Program for the Deaf 
(RDSPD). Local ISDs may contract with the RDSPD to provide services. The Teacher of the Deaf and Hearing 
Impaired has these responsibilities: 

• Assisting the team with the adaptation of assessments to make sure they address the hearing impairment 

• Attending all IEP meetings and make recommendations to the team in developing IEP goals and objectives 
that address auditory issues such as auditory training, communication skills, speechreading skills, etc. 

• Providing direct or consultative services to the child and/or his educational team to support general instruction 

• Providing direct instruction to the child in appropriate areas such as the development of sign language, 
auditory training, speechreading, language development, etc. 

• Providing direct or consultative services to the child and/or his educational team on the use of assistive 
devices such as his/her hearing aid, cochlear implant, FM system, TTY, etc. 



REGIONAL DAY SCHOOL PROGRAMS FOR THE DEAF (RDSPD) 

Learn more about RDSPD programs through the TEA website by going to <http://www.tea.state.tx.us/deaf/>. 

Eligible children with deafblindness may receive all or part of their services from an RDSPD program. There are 
a number of programs in most regions of the state, although not necessarily a program located in every district. If a 
school district hires their own Teacher of the Deaf or Hearing Impaired the services related to a deafblind child's 
hearing loss may or may not come from an RDSPD program. Also, some children who are deafblind may have a mild 
hearing loss and do not qualify as auditorially impaired for the purpose of receiving services from RDSPD. All of this 
is determined at the IEP meeting. RDSPDs often have a center-based program or special classrooms located on the 
campus of a neighborhood school. Students served by an RDSPD program may receive consultative or direct ser- 

26 



vices (auditory training, language development, etc.) from an RDSPD Teacher of the Deaf and Hearing Impaired, 
assessment support, and/or technology such as FM Trainers. 

EDUCATION SERVICE CENTERS (ESC) 

ESC websites are accessible from the TEA website. Go to <http://www.tea.state.tx.us/special.ed/escinfo/ 
director.html>. 

The local ISD and RDSPD programs receive support from the Education Service Centers (ESC). There are 
twenty ESCs, each serving a specific region of the state. The ESC may provide direct services to a child with a visual 
impairment, but generally it supports Teachers of the Visually Impaired and Orientation and Mobility Specialists who 
are employed by the districts. This support is provided primarily through planning, supplemental funding, and in- 
service development in its region. Each ESC must develop, with stakeholders, a regional plan to jointly determine how 
to improve student performance. These plans address many areas of educational services and are required in order to 
receive supplemental funding from the Texas Education Agency. Since 1 998, each ESC also has a designated staff 
member who is a Deafblind Specialist, with specific duties relative to this population of students with combined hearing 
and vision losses. 

TEXAS SCHOOL FOR THE BLIND AND VISUALLY IMPAIRED (TSBVI) 

For detailed information about TSBVI go to our website. It is located at <www.tsbvi.edu>. 

TSBVI is a special public school established by the Texas Legislature to provide specialized and intensive services 
which focus on the unique learning needs of students with visual impairment, including those with additional disabilities. 

Regular school-year placement 

TSBVI offers a comprehensive educational program during the regular school year. Students must be referred by 
the local IEP committee and admission is considered on an individual basis. Curricular offerings include regular 
academics, functional academics, and basic skills programming for 6-2 1 year-olds. Services are provided during the 
school day and in residential programming. 

Summer school 

There are a variety of summer school programs that range in duration from 1 -6 weeks. Parents can make applica- 
tion directly to TSBVI for summer school programs. Last year's summer offerings included: elementary and second- 
ary level enrichment programs, career education offering non-paid work training and paid work experiences for sec- 
ondary students; specialized programs in technology and mathematics, and specialized camps for students with visual 
and multiple disabilities including deafblindness. 

Short programs 

Beginning in 2000, short courses are being offered at TSBVI during the regular school year to students enrolled in 
their local ISD programs. A course in daily living skills is offered over a series of four weekends in a single school year. 
Two week long technology programs have been scheduled for this year. A week of individualized study is being 
provided in six sessions throughout the year. Many new programs will be developed from year to year. (See the 
Summer 2000 issue of SEE/HEAR for more about these programs, or visit the TSBVI website at <www.tsbvi.edu>.) 

Outreach 

There are three branches of Outreach focus: Statewide Programs, Visually Impaired Outreach, and Deafblind 
Outreach. 



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Statewide programs are in place to manage the American Printing House for the Blind Quota Funds used to 
purchase and disseminate (free to districts) specialized materials such as braillers, braille paper, light boxes and so on. 
The annual statewide registry of eligible students is conducted at TSBVI. Other statewide functions are coordination 
of teacher preparation issues, mentoring for VI teachers and O&M specialists-in-training, and statewide staff develop- 
ment. TSBVI works collaboratively with all twenty Education Service Centers, as well as with universities, the Texas 
Commission for the Blind, and other related agencies. 

Visually Impaired Outreach staff provide training and support to professionals working with babies and toddlers 
0-5, professionals serving students 6-21 , and to their families. The team works with individual students or supporting 
a district wide program for visually impaired students. The Technology Loan Program is part of this branch of Out- 
reach. 

Texas Deafblind Outreach is a similar team. In addition to support for professionals and families, there is a focus 
on transition issues related to the post-educational world. Texas Deafblind Outreach also coordinates the INSITE 
curriculum training for professionals working with children 0-5 with multiple sensory impairments. 

Much of the focus of Outreach is on helping families and professionals. Activities include directly consulting with 
a family and school program and suggesting programming recommendations, giving workshops, conferences, or small 
local in-service opportunities, and by providing leadership in statewide issues and training in the area of visual impair- 
ments and deafblindness. 

Curriculum 

This department develops and publishes a variety of materials for teachers and parents on topics including orientation 
and mobility, a curriculum for visually and multiply impaired students, and a paraprofessional handbook. 

TEXAS SCHOOL FOR THE DEAF (TSD) 

Learn more about the various programs available for students at TSD by visiting their website. Go to <http:// 
www.tsd.state.tx. us/>. 

Texas School for the Deaf (TSD) provides residential school placement, summer school programming, a special 
transition program, workshops for parents of students attending TSD and serves as an Educational Resource Center 
on Deafness. Unlike TSBVI or other residential programs, parents may independently refer their child to TSD or the 
referral may come as a result of the IEP committee's recommendations. Children who attend TSD may have previ- 
ously attended Regional Day School Programs for the Deaf (RDSPD) or inclusive programs in their home school 
districts. 

TEXAS COMMISSION FOR THE BLIND (TCB) 

Although Texas Commission for the Blind is not specifically an education agency, there are complementary services 
in the area of education available through mis agency. To learn more about their role in both education and especially 
in rehabilitation go to their website at <http://www.tcb.state.tx.us/>. 

Texas Commission for the Blind provides a variety of services. Their service focus is geared more towards non- 
educational needs such as in-home training in daily living skills, and tuition for summer camps. They also can assist with 
travel and registration costs for families attending training. The TCB children's caseworkers or transition counselors 
can also support the parents and student in advocating for educational services by helping them prepare for, and by 
attending, the ILP meeting. If the child is deafblind, the TCB also offers support to the family, the student, and the 



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children's caseworker or counselor by providing a deaf-blind specialist. A deaf-blind specialist can determine the 
need for technology and services that are unique to deafblindness, such as getting and using a TT Y, a vibrating alarm 
clock, or security devices. 

TEXAS EDUCATION AGENCY (TEA) 

The lead agency in educational services in Texas is of course, the Texas Education Agency. To learn more about the 
full scope of this agency's work go to their website at <www.tea.state.us>. 

The TEA is mandated to ensure that all Texas students are provided a free and appropriate education. The TEA 
helps to monitor the effective implementation of the Federal Individuals with Disabilities Education Act, as well as state 
and commissioner rules and regulations regarding special education services. We are fortunate in Texas to have people 
in the agency designated to address issues specifically related to vision or hearing impairments. Marty Murrell assists 
the state in advocating for and creating quality services for students who are visually impaired and/or deafblind. Sha 
Cowan assists the state in advocating for and creating quality services for students who are deaf and hearing impaired, 
and supports efforts for students with deafblindness. 

There are a wide array of agencies with special roles in assisting the child with a visual impairment and/or 
deafblindness and their families. More information is available on each at the websites noted above. We hope you will 
explore further, to ensure that your child is receiving the most appropriate education possible! 



The Importance of Touch in Parent-Infant Bonding 

by Gigi Newton, Teacher Trainer, TSBVI, Texas Deafblind Outreach 

Editor's note: In 1992, Gigi Newton, Teacher Trainer with Texas Deafblind Outreach, began to share 
information with our team about the benefits of massage therapy with children who are deafblind. During this 
time, Evelyn Guyer, a certified infant massage therapist, had begun to train individuals in the use of Bonding 
And Relaxation Therapy (BART) and had received a grant to train parents and others to use these techniques 
with deafblind children. Gigi wrote an article about some of the work being done by Evelyn and others that 
was published in the July 1992 edition o/P.S. News (the Deafblind Outreach newsletter before SEE/HEAR/ 

Also in 1992, through Gigi and Stacy Shafer, Early Childhood Specialist with Visually Impaired Outreach, 
we learned about Active Learning theory from Dr. Lilli Nielsen of Denmark. Active Learning focused on 
providing the child with blindness opportunities to be an active participant in interactions with the environ- 
ment. This approach benefits children with visual impairments by assisting in the development of body aware- 
ness and motor skills, cognitive skills such as comparing and contrasting qualities (heavy, light, soft, hard, 
smooth, rough, noisy, quiet, vibrating, still, etc.), and choice-making. 

In 1997, I attended a session at the National Deafblind Conference in Washington, D.C titled "Hands: 
Tools, Sense Organs, Voice ", presented by Barbara Miles. Her session focused on the functions of hands in 
cognitive, linguistic and emotional development for children with deafblindness. In May of 1999, DB-LINK 
published Barbara s article, "Talking the Language of Hands to Hands. " This article (which is available on 
the DB-LINK website at <www.tr.wou.edu/dblink> ) looks at the role of hands in early development for chil- 
dren with blindness, deafness, and deafblindness, and suggests strategies for facilitating hand development in 
children with deafblindness. 



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For the past several years, the Texas Deafblind Outreach team has been discussing the importance of these 
theories and approaches in the education of children with deafblindness. Developing the tactual sense, body 
awareness, the use of hands, and establishing bonds of trust between the child and caregiver or instructor are 
key components in the child's ability to benefit from instruction. This is especially true when the child is 
severely visually and auditorially impaired, but is also true to some degree for any child with sensory impair- 
ments. Many early literacy and learning skills require the development of the tactual sense, the awareness and 
use of hands and fingers, the child's willingness to trust an instructor who guides his/her hands to explore 
objects and people in the environment. 

In the summer or early fall of 2001, Texas Deafblind Outreach plans to offer a workshop for parents and 
members of their childrens' educational teams that emphasizes these approaches. Future editions o/SEE/ 
HEAR will also feature articles on these topics to help you decide if this workshop might be beneficial for you. 
Here we are reprinting Gigi 's 1992 article about infant massage and the importance of touch in parent-infant 
bonding. Touch is a powerful way to communicate. 

Touch from another human being can be a nourishing medicine or a damaging poison. Without words, we can show 
affection by giving a hug or by stroking a child's arm, or we can show disapproval by using our hands to restrain a 
child's hand. The importance of touch for a child with deafblindness is apparent. The child will use this sense exten- 
sively to develop communication skills, to help orient in different environments, and most importantly to connect 
socially with others. This article focuses on the power of gentle touching and suggests ways in which touch can make 
a positive change in your life and the life of your child. 

What does caring and loving touch do for infants? It is a necessary part of developing attachment between the child 
and parents. It is the beginning of communication between you and your child. Because you make him feel secure, the 
child learns to trust you and develops an emotional tie to you. The child's response to those feelings of security 
deepens your feelings of love and protectiveness towards him. It is what Dr. T. Barry Brazelton refers to as the parent 
and child "falling in love" with each other. 

The most important thing parents can do to help develop this attachment is to first become careful observers of their 
child and learn how to interpret his needs. A newborn communicates his needs or feelings to his parents primarily 
through crying. When a baby's cry is responded to quickly and warmly, the child begins to develop a bond or 
attachment to the caregiver. 

When a child is not responded to he does not feel safe. As a result his sleeping, eating, and social interactions can 
all be affected. According to research findings, if a baby knows a caregiver will respond, the baby begins to reserve 
crying for more specialized needs. This finding disputes the belief that babies are spoiled by parents who respond 
every time to their child's crying. 

Talking to a baby while responding to his cry lets him know that the caregiver understands his feelings. Over time 
he begins to be comforted by the voice and to understand that words are a way of communicating. This situation 
changes somewhat with children with deafblindness. 

Babies with deafblindness will need to have more input through other senses such as touch, smell, etc. because of 
the information that is lost to them through their decreased vision and hearing. Try cuddling the child against your chest 
while you are speaking or holding his hand or foot against your cheek or chest to let him feel the vibrations of your 
voice. Use a consistent signal, like soft pats on the back or stroking his forehead to communicate your empathy. 



The crying behaviors of infants with hearing, vision, and /or neurological problems may be different from an infant 
without disabilities. It may take more observation to understand what their cry means and how to respond to them. 

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Parents might try to list times when the baby cries and note any patterns in the baby's environment that might be causing 
him distress. If all the child's basic needs (i.e., food, dry diapers, companionship, etc.) have been met and the child 
continues to cry, the parent may need to look for signs of over-stimulation. Some of these signs are: turning the body, 
face or eyes away; closing his eyes; arching the back; spitting up; rapid shallow breathing; changing color; hiccupping. 

It the child is over-stimulated you may need to try some inventive approaches to consoling your baby. Preventively, 
you can try to keep your baby's daily schedule as consistent as possible. You can make the environment calming by 
dimming the lights, dropping the noise level, and reducing social stimulation. You may also try things like placing him in 
his travel chair on the washing machine so he is lulled by the vibrations. Taking rides in the car, running a vacuum 
cleaner, anything that produces a steady vibrating motion or monotonous sound, can also help him to relax or calm. 
You will have to be creative in finding the type of calming actions that work best for your child. 

Moms and dads also bond with their babies by kissing, cuddling, and making eye contact. Babies with vision, 
hearing, or motor impairments may not receive as much feedback from this type of physical contact because of their 
impairment. Ask your Vision Teacher to help you decide how your baby uses his vision and how to adjust the lighting 
in his environment to maximize the use of his vision. For example, the baby might see your face better if the light came 
from behind him so he does not have to look into a glaring light when he turns to you. To keep from startling a baby 
who may not hear your voice, a "signature" scent (hand lotion or perfume) may provide a cue that you are near. 

Infants with seizure disorders or motor impairments may not respond well to touching and holding. Certain types of 
touch may actually trigger a seizure in some children with seizure disorders because it is stressful. Some children are 
tactilely defensive or they have abnormal muscle tone. When a baby does not show a typical response to a parent's 
attention the parent may interpret the baby's response as rejection. The parents may begin to hold the child less often. 
However, the child's atypical response to touch may relate to muscle tone rather than to feelings about his parents. 
With these children, it is critical for the parents to learn to touch their child in a way that is acceptable and pleasurable 
to the child. 



Physical therapists and occupational therapists can help parents discover what types of physical touch their child 
can tolerate and learn to enjoy. They can also make suggestions about textures (for clothing, bedding, etc.) that may be 
more pleasing to the child. Parents may want to start with a few minutes of touching, and increase the time gradually as 
the child can tolerate it. Often children prefer firm pressure on their arms and legs as opposed to light stroking. When 
using light strokes move in the direction of the hair growth, not against it. Avoid applying pressure on the spine. As the 
child becomes comfortable with being touched he will become more comfortable touching things and people in his 
environment. If a child does not enjoy touching, he will have a difficult time learning to explore his surroundings. 

In Touching by Montagu we learn that holding and rocking a baby has physiological and emotional benefits. 
Touching increases the baby's cardiac output, promotes respiration that in turn discourages lung congestion and helps 
the baby's gastrointestinal function. The movement of rocking often helps in digestion and absorption of food. 

During normal home activities such as diapering, bathing and bedtime, incorporate a few minutes of gentle touching. 
Rubbing on baby lotion, cuddling before bedtime or massaging arms and legs during a bath can add an extra measure 
of caring to ordinary events. Sometimes these caring touches can even make a bothersome event pleasurable. 

One special technique of touching that is being used to increase bonding is infant massage. Infant massage is a more 
structured way of touching. Many hospitals use infant massage with premature infants. Current studies seem to 
suggest infant massage may enhance a premature baby's physical growth and development. Infant massage is some- 
thing you do with your baby as opposed to something that is done to your baby. It is a way for parents to connect with 
their child on a special level. Massage can help parents learn the way their baby's body looks and feels when he is 
tensed or relaxed; the look and feel of a gassy stomach; the difference between pain and tension. 

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RESOURCES AND REFERENCES 

If you want information about infant massage training contact: The International Association.of Infant Massage 
Instructors, E. Micki Riddle, R.N., Ph.D., Executive Director, 1891 Goodyear Avenue, Suite 622, Ventura, CA 
93008 or phone (805) 644-8524. There is also a website; go to <http://www.iaim-us.com/>. The following books 
can be ordered through the website, by calling toll-free (888) 448-9489 or by e-mailing IAIM4US@aol.com: 

Baby Massage: Parent-Child Bonding Through Touch, Amelia D. Auckett, Harper Collins, 1 989. 

From the Hand to the Heart (book and video tape), Evelyn Guyer. This is a book for parents and 
caregivers who care for disabled individuals. 

Infant Massage: A Handbook/or Loving Parents, Vimala Schneider McClure, Bantam Books, 2000. 

Touching, Montagu, A., HarperCollins, 1986. 

Another booklet that may be useful to parents is available from the Blind Children's Center, RO. Box 29 1 59, Los 
Angeles, CA 90029 or from their website at <http://www.blindcntr.org/>: 

Move With Me: A Parents ' Guide to Movement Development for Visually Impaired Babies, Blind 
Children's Center (also available in Spanish). 







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Tell Me, and I'll Forget 

Terry Murphy, Executive Director, Texas Commission for the Blind 

The title of this article is from the old Native American proverb: Tell me, and I'll forget Show me, and I may 
not remember. Involve me, and Til understand. The first part of the proverb reminds me of a class in which the 
drone of the teacher reading from a textbook never quite penetrated my preoccupation with the more important 
subject of lunch the next period. The results from those occasional days, of course, you already know. Inevitably there 
appeared on my desk - the TEST. If I could only remember what I'd heard! Nothing. The only thing I knew for sure 
was that the answers to questions 3 and 7 were definitely not "hamburger" and "french fries." 

Fortunately for me, not many of my learning experiences were limited to the "tell me" variety. Most were right in 
step with the observation of the first occupants of our great country: I remember best those subjects in which I was 
fully involved. This is why I have advocated over the years for full and active consumer and parental involvement in the 
services the agency provides. No matter what you tell a person about blindness, until you show them the benefits of 
certain skills and get them involved in reaping the benefits as they learn, the information you told them won't do much 
good on "test day." 

Test days for people who are blind are those days in which they want to independently achieve without sight 
something that another person does with sight, such as navigate their way to the grocery store or to work, or try out the 
monkey bars at school. Typical test days for parents of children who are blind are those days when they are called to 
participate in their child's ARD or when they are trying to locate a fulfilling afternoon activity for their child. 

The Commission measures the success of its services against "test scores" of its consumers. We really celebrate 
when consumers graduate summa cum laude from our programs, which means they have gained the skills, training, 
knowledge, and equipment they need to be confident in their own abilities. Parents graduate with equally high honors 
when they have the skills to participate as a full partner in their child's educational program and have a reservoir of 
activities and resources for their child. 



32 



One of the major ways consumers and parents are kept involved in the learning experiences offered by the Com- 
mission is through written plans. These plans assure that consumers and parents are not only involved in planning the 
outcome they expect from services, but also in planning the individual steps along the way. In our Vocational Rehabili- 
tation Program, the plan is an Individual Plan for Employment. Our Blind and Visually Impaired Children's Program 
uses a Family Service Plan. Both of these formats have been revised and improved this year. 

Our new family service plan is set up so that the basics we could describe as "Confidence 101" skills are covered, 
which when learned, will produce the highest real-life test results for families who have children with visual impairments, 
including children with multiple disabilities. These core services include family services, educational support, indepen- 
dent living skills, social-emotional development, leisure and recreational skills, prevocational skills (or future planning 
for children with multiple disabilities where work does not appear to be an option), communication skills, travel skills, 
and low vision and medical services. The plan changes as the child progresses and reaches new developmental 
milestones. The progress criteria then help validate that the child and parents are on the right path or suggest that 
another direction is better to reach the planned goal. 

Coming back to the old proverb, the Commission's staffhas been challenged to reinforce what they "tell" consum- 
ers and parents by getting them fully involved in the family service plan so that what is heard is not forgotten on test 
days. In reality, however, we can share information and the knowledge that we have gained over decades of experi- 
ence, but the willingness to listen and be fully involved in core services we know are needed, rests with the people who 
come to us for assistance. 

If you have had the opportunity to be involved with our new family service plan, we would welcome your feedback. 
Are we developing plans with you that involve you in a way that helps you understand why certain core skills will better 
prepare you and your child for the many test days coming your way? If not, what do we need to do differently? Just 
as important, how actively involved are you in your family service plan? Only together can we make a difference! 

In Response 

By Dr. Phil Hatlen, Superintendent, Texas School for the Blind and Visually Impaired 

PhilHatlen@tsbvi.edu 

I often receive telephone calls and mail from both parents and educators, requesting my opinions about the educa- 
tional services needed by a specific child. I recently had an e-mail exchange with an educator in another state, and I will 
share portions of our communication. I invite your comments and thoughts on this exchange. 



SCHOOL DISTRICT: 

I am writing to you because I have accessed your website and am very impressed with its content. A parent in our 
district is going to ask that we place his son in the residential school. The parent has stated that he wishes his son to 
receive services for approximately two years at this specialized setting, with the intent to return him to our district for 
high school. 

The student is performing well in our district. He receives, in our opinion, adequate support services, including 
orientation and mobility, OT, services from a teacher for the visually impaired, and a full-time paraprofessional. There 
are certain home conditions that may be playing on the father's thinking at this time. 

What would you think are the most compelling reasons to maintain a visually impaired student in our district, beyond 
the reasons/rational applicable to sighted peers? Our staffhave worked hard to make this placement work, and they 
do not wish to see this child removed. They feel it implies that they have failed in their educational endeavors for this 
student. What suggestions can you offer us? 

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MY RESPONSE: 

While I am employed by a school for the blind, I have always been an advocate for an array of placement options 
for blind and visually impaired students. I believe that there is no "one size fits all" approach to meeting the diverse 
needs of students who are visually impaired. Each child is an individual with individual needs, and these needs will 
change or be different, depending on degree of visual impairment, presence of additional disabilities, services available 
locally, and specific needs based on age and maturity. I believe that the IEP must consider the entire array of placement 
possibilities yearly, because the needs of visually impaired students will change yearly. 

I am a strong advocate for local placement of visually impaired students, and I urge my colleagues to always 
consider local neighborhood school first. On the other hand, I believe in a level playing field among all placement 
options. A child should not have to fail in one setting before being referred to another. I do not believe that a school 
for the blind should be the last option for a child. For some students, it should be the first, or perhaps, the only option. 





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So, what about the child who concerns you? In a perfect world he would have had a comprehensive assessment 
which should have included compensatory skills for academic learning, functional low vision, learning media, orienta- 
tion and mobility, career education, assistive technology, independent living skills, social interactive skills, and leisure/ 
recreation skills. All of these assessments should be done, or orchestrated, by the qualified, credentialed teacher of the 
visually impaired. Based on the outcome of these assessments, an IEP should be developed that reflects the strengths 
and needs of the student in all of these areas. Then goals and objectives are written to meet the needs identified through 
assessment. I would expect that most blind and visually impaired students would have at least one goal in each area 
assessed. 

It is only after assessment and IEP development have been completed that placement is considered. Giving careful 
consideration to frequency and duration of instruction for every goal and objective from the teacher of the visually 
impaired, a school district must determine whether it has the resources to meet the needs. In some cases, teachers 
from related services might be the primary service providers, and in the case of orientation and mobility, a specialist will 
provide the instruction. Of course, the classroom aide should never, ever, take the role of instructor. She may only 
reinforce skills and knowledge learned from the teacher. The crucial question is how many hours per week are needed 
for direct instruction from the teacher of the visually impaired. Today, many educators are saying that every blind and 
visually impaired student should have at least one hour per day of instruction from the teacher of the visually impaired. 
Any less than this, places the student at risk for not learning skills unique and necessary for blind and visually impaired 
persons. Some students are going to need more than an hour a day. What about them? Does your itinerant teacher 
have a schedule that is so flexible that she can provide for those students who have intensive needs? 

What are the resources available to the student from the school district? Are they adequate to meet the child's 
needs? Ifnot, will the district increase its resources to meet those needs? Ifthis is not possible, will the district refer the 
child to a program (such as the residential school) that can meet the intensive needs of a child? Is the district reluctant 
to make an out-of-district referral because it feels like failure? What if the district is doing all it can, and still cannot meet 
the unique, intensive needs of a child? 

Can we, you and I, discuss this child's needs on a level playing field? Are we both able to say that inclusion is simply 
one more option for placement and should be the goal, but may not be appropriate for all students? Can we agree that, 
for those children appropriately placed in a school for the blind, that is their Least Restrictive Environment (LRE)? Can 
we both say that philosophy does not drive our decisions, but consideration for the individual needs of a child is how 
we make decisions about placement. 

I wish you and the family well in your decisions. Please let me know if I can provide you with further information or 
clarification. 

34 



Legislative Update 

Compiled by Edgenie J. Bellah, Program Consultant, Texas Commission for the Blind 
and Cyral Miller, Director of Outreach, Texas School for the Blind and Visually Impaired 

This year parents and professionals will want to stay current on both Federal and State legislative actions, as the 
Texas Legislature will come back into session January 2001 . 

The American Foundation for the Blind's "Words from Washington" recently reported on two federal issues of 
interest. The first is pending Federal legislation that would allow qualified O&M specialists, rehabilitation teachers and 
low vision therapists to become eligible providers under Medicare. This would result in the professionals being reim- 
bursed from Medicare funds, which can be used to meet the budget needs. HR2870, the Medicare Vision Rehabili- 
tation Coverage Act of 1 999, has over 1 00 co-sponsors in the House. To see the text of the current draft, you can go 
to <http://www.medicarenow.orgadvocacy_legislation_bill.htm>. This bill would, for the first time, include vision re- 
habilitation services under the Medicare program. Once passed by the House, this bill will move to the Senate for its action. 

The second is that the Federal Communications Commission (FCC) has adopted rules for large broadcast stations 
and program distributors, to increase the availability of video description for television. With video description, narra- 
tion inserted into television programming describes actions or visual clues to supplement dialogue and soundtracks. 
Using a separate channel, viewers can access critical information that enhances their television programming. The new 
rules, to go fully into effect by April 2002, will require a minimum of fifty hours per quarter (about four hours a week) 
of prime time and/or children's programming for large broadcasters in twenty-five major television markets. Rules will 
also increase accessibility of emergency information. 

Another Federal issue we have been following that has tremendous impact on the lives of Texans is Medicaid. 
There are efforts underway nationally to extend health care coverage to more children through Medicaid and the 
Children's Health Insurance Program. All states were expected to have CHIP completely implemented this fall, or 
they would have to pay back whatever was not spent. Because the CHIP program was approved by the U.S. 
Congress when the Legislature's session had already ended and Texas just started enrollment in the spring, it has been 
reported that our state may have to pay back a significant portion of CHIP funding for missing the deadline. Unless 
efforts in Congress to extend the deadline for implementation of CHIP to bigger states such as Texas and California are 
successful, the loss of revenue could cut down on future efforts to secure health care coverage for children now falling 
through the cracks. 

There is also a pending federal lawsuit on Texas' implementation of Medicaid for children, and it appears likely that 
there will be legislation proposed in the next State legislative session to address concerns with this program. If you are 
interested in learning the specifics of the Medicaid lawsuit, you can go to <http://www.main.org/txchip/index.html>. 
Another hot topic families will be called to voice their opinions on is a movement to simplify Medicaid. The Texas 
CHIP Coalition is committed to making the TexCare Partnership a success for our uninsured children. However, 
unless the eligibility process for children's Medicaid is simplified to mirror that of CHIP, the TexCare Partnership will 
not reach its fullest potential. The Texas CHIP Coalition's proposal is simple - make the application processes for 
children's Medicaid and CHIP the same, so when a family mails in a TexCare Partnership application, it is complete. 
Other proposals include allowing mail-in applications and recertifications, making the verification and documentation 
policies identical to CHIP, eliminating the asset test, and adopting twelve months continuous eligibility. 

Of particular interest to our readers are the following three state issues: 

• Once the Texas Legislature gathers in January, we may see further debate on the benefits of specialized 
services for people who are blind. Given past legislative experiences, legislation may be proposed to further 
consolidate health and human services. 

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The Texas special education system recently updated State Commissioner rules affecting special education, 
in part to more closely align them with the Federal Individuals with Disabilities Education Act, amended in 
1 997. Proposed changes were opened for public comment in early fall, and by the time you read the final 
amendments to 1 9 TAC Chapter 89, Adaptations for Special Populations, Subchapter AA. Special Educa- 
tion Services may be posted on the TEA website at <www.tea.state.tx.us/rules>. There were changes 
proposed in the eligibility criteria for visual impairment and deafblindness as well as significant revision of 
sections detailing procedures for provision of services to students placed by their parents in private schools. 

The new Commissioner rules mention certified teachers of the visually impaired as necessary team members 
for many parts of the special education services provided to visually impaired and deafblind students. The 
State Board for Educator Certification has been reworking the entire teacher certification process in Texas for 
both regular and special education. Information provided by the Alliance of and for Visually Impaired Texans 
( AVIT) indicates that the SBEC is planning to continue requiring specialized credentials for these teachers. 
That is good news for those who were apprehensive that this kind of expertise might no longer be required. 
However, there is a concern that decisions about how the VI credentials will be defined will be made too late, 
after revamping all the other systems for regular and generic special education teacher certification. Without 
quick action, there will be a time while systems for teacher certification in visual impairment are being de- 
signed and implemented during which no new teachers will be approved, aggravating an already existing 
shortage in VI teachers. 



Any legislative session brings the promise of surprises. Families and professionals who want to stay informed can 
research legislation at <http//www.capitol.state.tx.us> and be prepared to contact their Representatives and Senators 
to advocate for services they feel are important. 



National Braille Press Meeting the Growing Demand for Braille 

Reprinted with permission from National Braille Press Website 







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To achieve full participation in the work place, family activities, and civic affairs, blind people need access to the 
printed word. For persons with total or profound loss of sight, braille is the only medium for true literacy. They cannot 
see large print, and although tape recorders and synthesized speech have tremendous benefits, they are no substitute 
for real reading. The tape recorder did not cause sighted people to abandon print, nor did the radio displace newspapers. 

Braille also gives blind people more options in life. Recent studies have demonstrated the close correlation between 
early braille literacy and higher employment rates and income, and more time spent on reading in adulthood. For 
example, in a survey of adults age 1 8-55 who were blind since infancy, those who reported extensive use of braille had 
a far lower unemployment rate (33%) than did the group as a whole (58%). 

As the benefits of braille literacy have become better understood, blind people, parents, and others have led a 
national movement to ensure that blind children have the opportunity to learn braille in public schools. Currently, 
twenty-nine states have passed braille literacy bills. This new legislation, advances in technology, and the spirit of 
accommodation inspired by the Americans with Disabilities Act have escalated the demand for braille. 

THE ROLE OF NATIONAL BRAILLE PRESS 

Materials in braille used to fall into three categories: religious publications, leisure reading, and schoolbooks. Na- 
tional Braille Press was founded in 1 927 to provide blind people with practical information to be responsible and 
productive citizens. Our books, often developed with blind people as authors or co-authors, are distinct for their 
subject matter, quality of braille, readability, and affordability. 

36 



Although books in braille are more expensive to produce than print, we adhere to a policy of charging prices no 
higher than those for comparable editions for sighted readers. Charitable gifts and grants make up the difference. 

We also transcribe magazines, menus, guides, government documents, and other print items in a self-sustaining 
contract services program. Nearly half of our employees are blind and fill positions at all levels in our organization. 

PROGRAMS 

Children's Braille Literacy, our literacy program, instills readiness and motivation to read. We re-manufacture 
classics and contemporary picture-story books, donated by publishers, in alternating print and braille pages. These 
unique books enable parents and children, whether sighted or blind, to read together in the home. Through the catalog, 
which is available at <www.nbp.org>, families can find interesting publications such as: Humpty Dumpty and Other 
Touching Rhymes, Just Enough To Know Better, and How to Do Homework Without Throwing Up. 

We are also celebrating our tenth year having a children's braille book club! Each month, we offer a new print- 
braille title for ages preschool through third grade, and for the same price as the print book! Membership in the club is 
free, entitling you to receive monthly print or braille notices, which describe the book of that month. You can order it 
if you want, or not. There is no obligation to buy. Or, you can join the club and automatically receive a print-braille 
book each month for $ 1 00.00. Charge your membership today and start building a library for the whole family. 

Computer Access 

A variety of technical manuals, reference cards, and guides help blind people get started and keep abreast with 
software and Internet applications. These publications are particularly important for job readiness and performance. 

Self-Help 

Among our most popular materials are books for self-improvement and life-long learning. They include books and 
periodicals on employment and the job search, health and wellness, child care, consumer guides, handicrafts, current 
affairs and writing. 

For more information about the National Braille Press, please call (800) 548-7323 or access the website at 
<www.nbp.org>. 



New List for Blind Parents Now Available 



The Committee on Parental Concerns and the National Federation of the Blind announced recently that they are 
sponsoring a blind parent mailing list that creates a forum for blind parents to share their experiences. Topics may 
include but are not limited to solving logistical problems (such as how to manage a couple of wiggly toddlers at a 
shopping mall when you need one hand for your cane and the other to carry packages) and emotional issues (such as 
dealing with the public, handling a child's embarrassment about blindness, etc.). Parents are also encouraged to share 
resources such as arranging the exchange of print/braille books. There will also be occasional posts concerning topics 
of interest to blind persons and/or members of the National Federation of the Blind. 

To subscribe to the list, send a message to <listserv@nfbnet.org>. In the body of the message put: subscribe 
blparent (speech synthesizer users note that listserv has 8 letters, no "e" on the end, and "blparent" is b-1-p-a-r-e-n-t). 

You can also reach the NFB NET BBS via the World Wide Web at <http://www.nfbnet.org>, via FTP at <ftp:// 
ftp.nfbnet.org>, or by pointing your Telnet client to <nfbnet.org> or <209.98.54.33>. You can also call using a 
conventional modem by dialing (612) 869-4599. 

37 



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Mail ore-mail your new classifieds to Jim Durkel at: 

TSBVI Outreach, 1 100 West 45th St., Austin, TX 78756, orJimDurkel@tsbvi.edu. 

An up-to-date Statewide Staff Development Calendar is posted on TSBVI's website at <www.tsbvi.edu>. 



2001 Texas Symposium 

on Deafblindness 

"Communities and Connections" 

at the Radisson Hotel Central Dallas 
February 16-17,2001 

Texas Deafblind Outreach invites parents, adult family 
members, and professionals serving or planning to serve 
individuals with deafblindness (ages 0-22) to attend this 
event which features state, national and international 
speakers such as Dr. Jan van Dijk, Dr. Linda Mamer, 
Dr. Sandra Davenport, Sally and Andrew Prouty, Tom 
Miller, Barbara Miles, Steve Perreault, Marsha Dunn 
Klein, Marlyn Minkin, Dr. Lauren Lieberman, Millie 
Smith, Cathy Allen, Edwin Carter, Rosie Yanez, and 
others. This conference features general and breakout 
sessions on topics such as interveners, van Dijk 
methodology, sexuality, mental health issues, family life, 
eating issues, recreation and fitness, self-determination, 
use of routines and calendars, adult services, 
CHARGE, Usher, and Congenital Rubella Syndromes. 

Co-hosting our Friday evening social will be the Deaf- 
Blind Multihandicapped Association of Texas. There 
will be a variety of opportunities for networking and 
socializing including an awards banquet on Saturday 
honoring individuals who have made a difference in the 
lives of Texas children with deafblindness. 

Registration, travel and child care funding assistance is 
available to parents and other adult family members 
from Texas who wish to attend. Limited spaces are 
available to out-of-state participants. 

Registration Rates: 

Parents, Family Members, Professionals - $1 50 

Paraprofessionals - Free 

Out-of-State Participants - $250 

Registration Deadline: January 10,2001 



INSITE: 

A Home-Based Model 

for Infants, Toddlers & Preschoolers 

Who Are Sensory Impaired 

with Other Disabilities 

This six-day training is for professionals who work with 
these children and their families. If you are interested in 
attending this training or bringing this training to your 
area, call Gigi Newton at (512) 206-9272, or e-mail 
her at GigiNewton@tsbvi.edu. 



Houston, Texas 

Part II- Jan. 30-31 
&Feb. 1,2001 
Contact: Jake Pino 
(713)744-6378 



Mt. Pleasant, Texas 

Parti- June 4-6, 2001 
Part II -June 27-29, 2001 
Contact: Donna Clopton 
(903)572-8551 



Austin, Texas in May 2001 



Moving the Edge 

2000 Annual TASH Conference 

December 6-9, 2000 

The Fontainebleau Hilton Resort and Towers 

Miami Beach, Florida 33140 

For more information 

Call: (800) 482-TASH (8274) or (410) 828-8274 

Website: <www.tash.org> 

This year's TASH offers over 300 cutting-edge ses- 
sions on issues that affect the lives of people labeled 
with disabilities, with particular focus on those who have 
been labeled with "severe or multiple" disabilities. Pre- 
senters include people with disabilities, parents, educa- 
tors, researchers, direct support professionals, and many 
committed and knowledgeable others who work every- 
day to ensure the full participation of all! They will be 
offering practical strategies and information that you can 
put to use immediately. Representatives of many of the 
leading disability-related manufacturers, publishers, and 
suppliers will also be exhibiting. 



38 



ma 



Spring Short Classes at TSBVI 

I. Technology Week (secondary students) 

JAWS for Internet - February 25-March 2 

II. Math Week (secondary students) 

Adaptive Tools & Technology for 
Accessible Mathematics - April 1-6 

III. One-week individualized instruction 
on specific IEP objective 

Students receive one-on-one intensive instruction 
in any disability-specific IEP objective(s) jointly 
selected by the LEA and TSBVI. 

* High School Students January 2 1 -26 

* Middle School Students February 4-9 

* Elementary School Students March 1 8-23 

For additional information, contact: 

Dr. Lauren Newton, Principal of Special Programs 

phone: (512)206-9119 

e-mail: LaurenNewton@tsbvi.edu 



REGIONAL WORKSHOPS 

December 1, 2000 

Assessing Technology Needs 

of Students with Visual Impairments 

Location: Region IV ESC, Houston, TX 
Presenters: Debra Leff, Region XIII ESC 
and Cecilia Robinson, Region IV ESC 
Contact: Cecilia Robinson, (713) 744-6379 

December 5-6, 2000 
Putting the Pieces Together: 
Effective Teaching Strategies 
for Children with Severe Disabilities 

Location: Region I ESC, Edinburg TX 
Presenters: Sharon Davis, Michelle Goebel 
and Theresa Spong, Region III ESC 
Contact: Peter Graves, (956) 984-6165 

December 11, 2000 
Braille-N-Speak: Beyond the Basics 

Location: Region XIII ESC, Austin, TX 
Presenter: Debra Leff, Region XIII ESC 
Contact: DebraLeff, (512) 919-5354 



December 14-16, 2000 

The Arc of Texas and Region XX ESC Present 
The 8th Annual Inclusion Works! Conference: 
Diversity Shines 

Location: San Antonio, TX 
Contact: (800)252-9729 

January 24,2001 

Gathering Information and Programming 
for Students with Visual Impairments 
and Profound Disabilities 

Location: Region X ESC, Richardson, TX 
Presenters: Jenny Lace and Robbie Blaha, TSBVI 
Contact: Kitra Hill Gray, (972) 348-1 580 

January 25, 2001 

Meeting the Unique Needs of Students 

with Hearing and Visual Impairments 

Location: Region X ESC, Richardson, TX 
Presenters: Jenny Lace and Robbie Blaha, TSBVI 
Contact: Kitra Hill Gray, (972) 348-1 580 

January 29, 2001 

Intermediate Level: Using Routines with Students 

with Multiple Impairments 

Location: Region XIII ESC, Austin, TX 

Presenter: Millie Smith 

Contact: DebraLeff, (512) 919-5354 

January 31, 2001 

Beginning Level: Using Routines with Students 

with Multiple Impairments 

Location: Region XIII ESC, Austin, TX 

Presenter: Millie Smith 

Contact: Debra Leff, (512) 919-5354 

April 9-11, 2001 

Cognitive/Communication Assessment and 
Interventions for Children with Multiple 
Disabilities 

Presenters: Dr. Charity Rowland 

and Dr. Phil Schweigert 

Location: College Station Conference Center, 

College Station, TX 

Contact: Nodya Thornton, (936) 293-3787 

April 19-21,2001 
TAER Conference 

Location: Omni Hotels, Corpus Christi, TX 
Contact: Pamela Broadston, (806) 742-2345 



< 



39 



vm 



SEE/HEAR 

published quarterly: February, May, August, and November 

Available in Spanish and English on TSBVI's website at <www.tsbvi.edii>. 

Contributions to the newsletter can be mailed or e-mailed to section editors at: 

TSBVI Outreach 
1100 West 45th St. 
Austin, TX 78756 



Deadlines for articles are: 

December 1 st for the Winter edition 
March 1 st for the Spring edition 
June 1 st for the Summer edition 
September 1 st for the Fall edition 

Production Staff 

Editor-in-Chief- Kate Moss (512) 206-9224; 

KateMoss@tsbvi.edu 

Layout Editor - Craig Axelrod (5 1 2) 206-9435; 

CraigAxelrod@tsbvi.edu 

TCB Editor - Edgenie Bellah (512) 377-0578; 

edgenie.bellah@tcb.state.tx.us 

Website Editor - Jim Allan (5 1 2) 206-93 15; 

JimAllan@tsbvi.edu 

The audio version of SEE/HEAR is provided by 

Recording for the Blind and Dyslexic, Austin, TX. 



Section Editors 

Family - Jean Robinson (512) 206-9418; 

JeanRobinson@tsbvi.edu 

Programming - Ann Rash (5 1 2) 206-9269; 

AnnRash@tsbvi .edu 

and Gigi Newton (5 1 2) 206-9272; 

GigiNewton@tsbvi.edu 

Syndromes/Conditions - Kate Moss (512) 206-9224; 

KateMoss@tsbvi.edu 

News & Views - Edgenie Bellah (5 1 2) 377-0578; 

edgenie.bellah@tcb.state.tx.us 

Classified- Jim Durkel (512) 206-9270; 

JimDurkel@tsbvi.edu 

If you no longer wish to receive this newsletter, 

please call Beth Rees at (512) 206-9103 or 

e-mail her at BethRees@tsbvi.edu. 



IDEAS-* 
that y Work 

Offict of Special 
Education Program 



This project is supported by the U.S. Department of Education, Office of Special Education Programs (OSEP). Opinions expressed 
herein are those of the authors and do not necessarily represent the position of the U.S. Department of Education. 

The Outreach Programs are funded in part by IDEA-B Formula, and IDEA-D Deaf-Blind Federal grants. 

Federal funds are administered through the Texas Education Agency, Division of Special Education, to the Texas School for the Blind 
and Visually Impaired. Texas School for the Blind and Visually Impaired does not discriminate on the basis of race, color, national 
origin, sex, religion, age or disability in employment or the provision of services. 



Texas School for the Blind and Visually Impaired 
Outreach Program 
1100 West 45th St. 
Austin, Texas 78756 



NON-PROFITORG. 
U.S. POSTAGE PAID 
AUSTIN, TEXAS 
PERMIT NO. 467 



Cathy Johnson 
Kentucky School for the Blind 
1867 Frankfort Avenue 
Louisville, KY 40206 



SEE/HEAR 



A QUARTERLY NEWSLETTER ABOUT VISUAL IMPAIRMENTS AND DEAFBLINDNESS FOR FAMILIES AND PROFESSIONALS 
A collaborative effort of the Texas School for the Blind and Visually Impaired and Texas Commission for the Blind 



Winter 2001 



Volume 6, No. 1 



Table of Contents 

FAMILY 

Fun for All Ages 2 

A Proud Mom 3 

A Proud Athlete 4 

Ten Common Mistakes Parents Make During the IEP Meeting 4 

Are You Learning to Fish? 8 

PROGRAMMING 

Dressed to Distress? 9 

TheV.I.P.s: Visually Impaired Players and Very Important People 11 

What is the Expanded Core Curriculum for Blind and Visually Impaired Students? 15 

Stepping Over Thresholds: Transitions for Children and Youth with Visual Impairment 18 

SYNDROMES/CONDITIONS 

Clarifying a Point about Fetal Alcohol Syndrome 23 

Neurological Visual Impairment 

Also Known as: Cortical Visual Impairment, Delayed Visual Maturation, Cortical Blindness 24 

Central Auditory Processing Disorder and Auditory Neuropathy 26 

NEWS & VIEWS 

"You've Got Mail!" 30 

Clarification Regarding the Choice of Braille as a Reading and Writing Medium 32 

Follow the Braille Trail 33 

What I Learned Last Summer. 34 

New Guidelines Available to Provide Guidance on Making Software Accessible to Deaf or Blind Users 34 

FCC Expands Described Video 35 

New Web Features Will Help Employers Hire Workers with Disabilities 

and Help the Media Do a Better Job of Reporting on Disability Issues 36 

Proposed Changes for Students in Private and Home Schools 37 

Classified 38 



Kate's Corner 

It's a new millennium, and I am acutely aware of changes occurring all around me. Some are good, some not so 
good, and some are both. People retiring from successful careers to have more time to enjoy life, is a good thing. 
When the person retiring has been a mentor and constant star in your constellation, the change feels bad. Annie Wade 
(parent, TCB caseworker, and former Outreach Family Specialist) has retired. I have mixed feelings about this. She 
is taking offon the next big adventure in her life. When I think of her leaving us on our own, I become incredibly upset 
about this change. Then I tell myself, "If Iplay my cards right, I can still talk her into a bit of work here and there." 
Annie, I know I speak for all of the Outreach staff, TCB staff, and the educators and families you have served, when 
I wish you the very best in your next phase. I hope you really kick back and relax. But if you get bored, call me. 

Kate's Corner - continued on page 37 



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Editor 's note: The three articles that follow are written by parents and a student who attended the Second 
Annual Blind and Visually Impaired Sports Extravaganza which took place in the Dallas-Ft. Worth area in 
October, 2000. This event was organized by Region 10 Education Service Center and the major sponsors 
included the Lions International District 2-X1, Irving ISD, and Dr. Pepper. It was held at the Nimitz High 
School in Irving, Texas for individuals from all over Texas. This event included competitive events for school 
age students such as 25, 50, and 100 meter dashes, long jump competitions, shot put and soft ball throw, 25 
meter walk, wheelchair obstacle course, archery, beep ball, and goal ball. For infants and toddlers there were 
a variety of structured activities such as a parent-child obstacle course. Participants had an opportunity to vie 
for first, second, and third place medals in each event, but all participants received ribbons for participating. 

Region 10 staff initiated the first Sports Extravaganza in response to the need for increased emphasis on 
compensatory skills development for blind and visually impaired children and youth. While improved aca- 
demic performance may appear to be the major goal of compensatory skills development, the Sports Extrava- 
ganza is aimed at lowering the barriers visually impaired youngsters encounter in physical activities and ath- 
letic events. Limited vision prevents their physical imitation of the movements of others. This frequently 
delays their motor development, resulting in a lack of coordination and a feeling of discomfort in physical 
activity. Avoidance of physical fitness activities and the choice of inactive leisure activities is a natural conse- 
quence. If you or your child is interested in the Sports Extravaganza, contact Kitra Gray at Education Service 
Center Region 10 in Richardson at (972) 348-1580. 



Fun for All Ages 

By Marsha Lindsey, Parent, Carrollton, Texas 
<marsha@lindseyfamily.net> 



On Saturday October 14, 2000, Region 10 Education Service Center held the 2nd Annual Sport Extravaganza at 
Nimitz High School in Irving, Texas. The day was warm and windy with the sun peeking out of the partly cloudy skies. 
We wore shorts and tee shirts anticipating a fun-filled day. My two-and-a-half-year-old son, Bryan, was signed up to 
participate in the obstacle course event that began at 1 0:00 a.m. Upon registering, Bryan received a tee shirt which he 
loved putting on and wearing. It made him feel special. He is special every day, but maybe more so on this day ! As 
a parent of a visually impaired child and as a visually impaired person myself, I knew that my son would have tons of 
fun. But I truly did not know what to expect. I had only attended events such as this as a student at Texas School for 
the Blind and Visually Impaired. So for me to go to the Sport Extravaganza as a parent, was an exciting, new 
experience. I never once thought that I would be having more fun than Bryan. I got to see my son do many things that 
he would not normally get to do. It was also wonderful for Bryan's daddy, Chance, who loves to see his son excel in all things. 

Earlier, the day started with events in track and field for students 6 to 22 years of age. There were many students 
from all over the state of Texas including TSB VI, Denton, and Irving. Many medals were given in the track and field 
events to speedy students who had a variety of visual impairments including those with multiple disabilities. It seemed 
that the sun would come out every time a student would receive a medal, which was often. My son, Bryan, being only 
two-and-a-half at the time, participated in the obstacle course. He was not the only little one having fun doing all of the 
obstacle course challenges. Due to Bryan's vision, he did have some difficulty with the course, but he had fun trying his 
best. And he did a great job. He even received a special medal from Kathy Rodriquez from Region 1 0. Though 
Bryan will probably not remember the event, I will be able to show him that he was an athlete at an early age. Also 
Bryan's O&M instructor ,Tricia Leone, was there to help him negotiate the obstacle course. So Bryan had many 
people cheering for him. The one thing that was so meaningful at this event was the encouragement of the bystanders. 
It was more important for the children to have fun than to win. Because in the eyes of the parents, sponsors, and 
volunteers every child, no matter the disability, was special, and was urged to do his/her very best. 



ma 



After a morning full of events for the little ones and the young adults, lunch was served. The Lions Club provided 
lots of great food including hamburgers, hot dogs, chips, and cookies. Bryan ate more food than I have ever seen him 
eat, and normally he is a very picky eater. Of course, after doing the challenge course numerous times, he was hungry. 
During lunch, Chance and I were able to have some adult time. We talked to Bryan's O&M instructor and Teacher of 
the Visually Impaired in a way that we had not been able to before. It was still a parent/teacher relationship but it felt 
more relaxed. We were able to learn more about these people who were working with our son. It was very important 
for me to have this time, since I normally see his instructor in a more formal way in our home or at school. 

I saw many people, including former teachers, whom I had not seen in years. They did not know that I had 
children. I am now the mother of three children including Bryan. It was a good time for both my husband and me. 
After we finished eating and chatting with old friends and new, Bryan was tired from so many runs of the obstacle 
course, and we decided to leave. The events continued on without us, and many more students won medals. The 
students had fun even though they could not all win "the gold." Being able to participate and compete with other 
students with similar challenges was the best part. 



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I would like to say that I hope in the future that there are more events like this. Not so much for me but for my son, 
so that he can be challenged by the different physical activities. I would also like to say thank you to Region 10 for 
sponsoring the event and to the Lions Club for the wonderful food. And another thank you must go to the volunteers 
who helped make this a wonderful event. It could not have happened without all of you. It truly was a FUN DAY 
FOR ALL AGES!!! 



A Proud Mom 

By Ann Elliott, Parent, Wichita Falls, Texas 
<ELLTANN@j uno.com> 

My husband, Dale, and I had the privilege of accompanying our son, Caleb, to Irving, Texas for Sports Extrava- 
ganza, October 1 3 & 1 4, 2000. Caleb is blind; therefore, he was eligible to participate in the sporting events. He was 
in the 10-12 age group. The events for this group included 1 00 meter run, 50 meter run, and 25 meter run. They also 
competed in standing broad jump, beep ball find, softball throw, hitting a beep ball offa T, and some areas of goal ball. 

This event, following on the heels of the Australian Olympics, did not pale in comparison. I was moved to see the 
pride and the effort put forth by every athlete. It was obvious they had done a great deal of preparation. The coaches 
and the officials took their jobs very seriously. They expected a lot from the athletes and were not disappointed. The 
rewards for the hard work came when awards were presented. The proud athletes took their rightful positions on the 
podium and were presented with Gold, Silver, and Bronze medals. Fourth place received a ribbon. It was very 
moving to see the pride on the faces of all the children. This was an environment where they could compete with their 
peers, and "may the best one win." It did not matter that some were blind, visually impaired, or even in wheelchairs. 
Every one put forth their greatest effort and was rewarded. One of the greatest rewards was the boost in self-esteem! 

The goal ball tournament for the older athletes was held on Friday night. The competition was fierce with every 
team playing as hard as possible. There were teams from as far away as the New Mexico School for the Blind. 



Caleb came home with three silver medals, two bronze medals and one ribbon. He has shared these with his sixth 
grade class and a kindergarten class where he is a mentor. Every child was properly impressed. I don't think I have 
ever seen such a sense of pride in my child. He competed as hard as he knew how and was rewarded. 

I would like to take this opportunity to thank all the staff, the Lions Club of Irving for furnishing such a fine lunch, and 



3 



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all the teachers who accompanied the athletes and cheered them on. Without all of you, this event would not be 
possible. Without you, many children would not have been able to travel to Irving. Without you, our kids would not be 
where they are today. Thank you! ! 

A Proud Athlete 

By Caleb Elliott (age 1 1 ), Wichita Falls, Texas 
<calebelliott@juno.com> 

I really enjoyed participating in Sports Extravaganza in Irving, Texas. It was held on October 1 3th and 14th. I 
participated in the 1 00 meter dash, standing long jump, 50 meter dash, soft ball throw, beep ball stop, beep ball hit for 
distance, goal ball stop and goal ball roll. I enjoyed watching the goal ball events with the older kids. 

My coach was Mr. Kaster. He is my Adaptive P. E. teacher at Ben Milam Elementary in Wichita Falls, Texas. He 
met me in Irving. I won three Silver medals, two Bronze medals, and one fourth place ribbon. We stood on a platform, 
and they put the medals around our necks, just like the Olympics! It was really neat! 



Ten Common Mistakes Parents Make During the IEP Meeting 

By Matt Foley, M.Ed and DeAnn Hyatt Foley, M.Ed., Parents, Lubbock, Texas 

Reprinted with permission from Mr. and & Mrs. Foley 

and Jenison Public Schools, Jenison, Michigan, article from The Morning News, Fall 1999 

Editor s note: Matt and DeAnn live in Lubbock, Texas. They have been married for seventeen years and 
have one son, Ryan, who is fifteen and in the ninth grade. Matt is a Licensed Professional Counselor with a 
M.Ed, who is in private practice. DeAnn has her M.Ed, in Special Education and has been the West Texas Area 
Development Director for the PATH Project since 1993. The PATH Project is funded through the U.S. Depart- 
ment of Education in Washington D. C. and is a Parent Training and Information Center for Texas. Currently, 
Matt and DeAnn are forming social skills groups for adolescents with Asperger s Disorder and related disor- 
ders. Matt and DeAnn have also developed a workshop that teaches parents and educators the special educa- 
tionprocess. Their workshop has been presented throughout Texas, at Yale University Autism Conference, and 
in Hawaii. I'm anxious to see them present as a couple and to read their book which will be published next 
year. 

When our son was diagnosed with PDD-NOS (Pervasive Disability Disorder-Not Otherwise Specified) in 1 990, 
we found ourselves ill-equipped for our new role as advocates for our son. Our first IEP (Individual Education 
Program) meeting was overwhelming. We found it very difficult to follow what the educators were talking about. We 
certainly did not know what our role was in the process. We had the expectation that the trained educators of our IEP 
team would make the best possible decisions for our son's education. Six months later it became abundantly clear that 
the decisions we had agreed to in the IEP meeting were not the best for our son's education. It was at this time that we 
began to educate ourselves about PDD-NOS and the Individuals with Disabilities Education Act (IDEA). In 1 993 we 
began working with other parents to help them become informed about their child's disability and the educational laws 
that are in place to provide a Free Appropriate Public Education. 

It is important that parents become informed and involved in their child's education. There are many sources of 
information and support in your state. However, the more skills you have and information you learn, the better you can 
advocate for your child. Over the past few years we have found that parents tend to make some common mistakes 
during the IEP meeting. The following is a list often common mistakes. 



MS 



1. Believing the professionals are the only experts 

It can be very intimidating to sit at a table with several educators and professionals. Professionals/educators do 
bring a great deal of knowledge and experience to the table. Though most parents do not have a background or 
degree in education, they have a great deal of knowledge and experience regarding their child. Parents are the experts 
in their own right. They provide historical information and the big picture from year to year. They know what works 
and does not work with their child and can be a great asset to the IEP team. 

Parents also have an intuitive sense as to what is appropriate for their child. After working with parents for nine 
years, we are still amazed at how parents are usually intuitively correct about what will work for their child. We 
encourage parents to follow their hunches, if something does not sound right, check it out. Usually after some research 
parents will discover their hunch was correct. 

2. Not making requests in writing 

Any request a parent makes needs to be in writing. This includes requests for assessments, IEP meetings, corre- 
spondence, related services, etc. Written requests are important because they initiate timelines that the school district 
must follow in response to your request. This will also create a paper trail. When you write a letter be sure to send it 
certified mail. When you have a discussion by phone with a school official, write a letter that briefly outlines what you 
talked about. Documenting your conversations helps prevent miscommunication. 

Documenting requests (i.e., teaching assistant, speech, etc.) for the IEP committee clarifies to the committee what 
you are requesting and allows you to use your own words (as opposed to the note taker paraphrasing your request). 
We encourage parents to type exactly what they think their child needs and list why they think it is educationally 
necessary. This helps parents think through why they are requesting a service for their child. Have the IEP committee 
record the written request as part of the IEP. At this point, the IEP committee has one of two choices; the committee 
can accept or deny the request. If the committee denies the request then they must follow the procedural safeguards in 
IDEA and provide written notice of why they are denying the parents' request. This method makes it difficult for an 
IEP committee to tell parents "no" without thinking through the options. If the request is not written down then the 
school district is not obligated to provide the service. Make sure you write it down. 

3. Not being familiar with Prior Notice section of the Procedural Safeguards (34CFR300.503) 

All sections of the Procedural Safeguards are important to parents. This particular section gives parents some 
leverage during IEP meetings. Whenever parents make a request for their child in the IEP meeting, the IEP committee 
is required under Prior Notice to provide the parents with written notice within a reasonable period of time. The notice 
must include the following: 

"(b) Content of notice. . . 

(1) A description of the action proposed or refused; 

(2) An explanation of why the agency proposes or refuses to take the action; 

(3) A description of any other options that the agency considered and the reasons why those 
options were rejected; 

(4) A description of each evaluation procedure, test, record or report the agency used as a basis 
for the proposed or refused action; 

(5) A description of any other factor that is relevant to the agency's proposal or refusal . . . 
(34CFR300.503)" . 

We have found many instances where a parent requests an assessment or service only to have the IEP team tell the 

5 



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parent it cannot be done. By making all requests in writing and by requiring the IEP team to provide Prior Notice, the 
parent makes the team accountable for its decisions. This practice also takes issues out of the emotional arena, 
allowing all team members to focus on IDEA standards. 

4. Requesting a related service instead of an assessment that supports the need for a related service 

Many times parents will request services such as speech, occupational therapy, physical therapy, etc. in the IEP 
meeting. Frequently the IEP committee will respond by stating that the student does not need the service. We 
recommend that parents do not request the service but request the assessment that supports the need for the related 
service. For example, instead of requesting speech for your child request a speech assessment. 

Only a certified or licensed professional is qualified to determine if a child needs or does not need a particular 
related service. As in number 2, list the reasons why you think an assessment is educationally necessary for your child 
and submit your request to the IEP committee as part of the IEP. 

5. Accepting assessment results that do not recommend the services you think your child needs 

Sometimes parents receive assessment results that do not accurately describe their child and/or do not recommend 
the amount and duration of services the parents think their child needs. Under 34 CFR 300.502 Independent Educa- 
tional Evaluation (IEE), parents of a child with a disability have the right to obtain an independent evaluation at public 
expense if they disagree with the results of the school's assessment. When the parent requests the IEE (in writing) the 
school has one of two choices; they may either provide the IEE in a reasonable period of time, or they may take the 
parents to due process. When an IEE is agreed upon, parent and school must come to an agreement as to who is 
qualified to assess the student. The examiner for an IEE cannot be employed by the school district. Parents should 
request the school district policy on guidelines and qualifications for their examiners. 

6. Allowing the assessment information to be presented for the first time at the IEP meeting 

Parents are entitled to have the assessment information explained to them before the IEP meeting. We encourage 
parents to have the person who administered the assessment give them a copy of the report and meet with them to 
explain the report several days before the IEP meeting. This enables the parents to think through the information before 
making decisions for their child. If all IEP decisions are based on the information from the assessment, it only makes 
sense for the parents to be knowledgeable and informed about the assessment results in a way they can understand. 

7. Accepting goals and objectives that are not measurable 

Measurable goals and objectives are paramount for your child's IEP. Without measurable goals and objectives, it 
is difficult to determine if your child has had a successful school year. In working with parents, we have encountered 
many IEP goals and objectives that are not measurable. 

All goals and objectives come from assessment data. Assessment has four different components: 

1) Formal assessment (i.e., WIAT, Woodcock- Johnson, Brigance), 

2) Informal assessment (i.e., classroom work), 

3) Teacher/parent observation, and 

4) Interviews. 

After the information has been collected about the student, it is compiled into an assessment report. Recommenda- 
tions on how to work with the student are listed toward the end of the report. If you receive an assessment report that 
does not give you recommendations for potential goals and objectives, the assessment is not complete. 

After the assessment has been completed, the IEP committee determines the student's present level of performance 

6 



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(PLOP) and states what the student is currently able to do. The committee then develops the IEP goals and objectives. 
The goals state what the student is expected to accomplish by the end of the year. Objectives break the goal down into 
increments. For example: 

PLOP: Based on the Brigance and classroom work Johnny is currently able to read on a fourth grade level with 
90% mastery. 

Goal: By the end of the school year Johnny will be able to read on a fifth grade level as measured by the Brigance 
and classroom work with 80% mastery. 

Objectives: 

• By October 1 , Johnny will be able to read fourth grade, second month level with teacher assistance as mea- 

sured by the Brigance and classroom work with 80% mastery. 

• By January 1 , without teacher assistance Johnny will be able to read on a fourth grade, sixth month level as 

measured by the Brigance and classroom work with 80% mastery. 



S! 



5 



A method of determining if your goals and objectives are measurable is to ask someone who is not on your IEP 
team to read them (i.e., a teacher, another parent, advocate, etc.). Then ask, " Hypothetically, if you were to go into 
the classroom, would you be able to see my child working on these goals and objectives?" If someone outside of your 
IEP team cannot answer "yes", then your goals and objectives are not measurable. 

8. Allowing placement decisions to be made before IEP goals and objectives are written 

Many times after assessment information is discussed, the IEP committee will determine the child's placement. 
Goals and objectives are always written before placement is discussed. To ensure that the child is placed in the Least 
Restrictive Environment (LRE) the IEP committee must determine: 

• Which of these goals and objectives can best be met in the general classroom? 

• With the remaining goals and objectives that cannot be met in the general classroom the committee determines: 
Which of these goals and objectives can best be met in the general classroom with modifications and support? 

This line of inquiry continues until all placement options have been decided upon for all the goals and objectives. 
The committee must always start with the LRE and then work toward a more restrictive environment as necessary. 
IDEA is very clear that the IEP committee must always consider the general education classroom as the first option for 
students with disabilities. 

9. Allowing your child's IEP meeting to be rushed so the school staff can begin the next child's IEP meeting 

This practice is particularly common at the end of the school year when educators are frantically trying to have IEP 
meetings for all the students who receive special education services. IEP meetings may be held one right after another. 
There is no problem with this practice as long as the members of the IEP team feel that all issues have been adequately 
discussed. Many times, however, parents feel rushed. It is important that all issues are adequately addressed before 
ending the IEP meeting. When the educators have not given themselves adequate time to address all relevant issues, 
request that the IEP team meet again at a more convenient time to further discuss your child's education. 

10. Not asking a lot of questions 

It is very important to ask questions and lots of them. Educators use many terms and acronyms specific to special 
education. Parents may become confused when these terms are used during the IEP meeting. This can add to the 
frustration that a parent may already be feeling when they do not understand what is being said. It is important to ask 
what the terms or acronyms mean. Unless a parent has a background in special education they are not expected to 



2 

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know the terms and acronyms. Informed decisions cannot be made when parents do not understand what is being discussed. 

The preceding is a short list of common mistakes parents make during the IEP meetings and some suggestions for 
avoiding these mistakes. At some point in time we have made all the mistakes listed above. We developed the habit 
of debriefing after every IEP meeting as to our performance during the meeting. We have gradually accumulated 
information and developed skills, and we continue to trust our intuition. 

We have found that when parents apply the suggestions listed above while working with their IEP team, they will 
see the results. It is important that parents continue to accumulate information and develop skills relating to the IEP 
process. Most parents feel overwhelmed by the special education process. Do not be discouraged in your pursuit to 
obtain the supports and services your child needs. We found it helpful to break the process down into small steps. 
When you use the suggestions listed above you will be that much closer to obtaining your child's Free Appropriate Public 
Education. After using each suggestion listed, pat yourself on the back for becoming an even better advocate for your child. 



Are You Learning to Fish? 

By Jean Robinson, Family Support Specialist, TSBVI, VI Outreach 

I want to share an e-mail that I received from a parent that describes the benefits she received from attending 
training on "Parent Advocacy and Self-Esteem." It was inspiring to me. 

The director of the Mountain States Parents CAN (website - <www.mspcan.org>), Teri Toothman, knows first- 
hand how difficult it is for parents of children with disabilities to get the skills and services their children need. Initially, 
Teri's staff did individual advocacy for parents and they were very successful. Later, the organization began teaching 
parents how to advocate for themselves and their children. What led to this change? 

Teri found an old Chinese proverb that sums up what their mission is all about. "Give a man a fish and you feed him 
for a day. Teach a man to fish and you feed him for a lifetime." 

Teri says, "I realized that we were actually doing parents an injustice by not giving them the tools they needed to 
advocate for their kids. In response to this discovery, I developed the Parents As Advocates curriculum. Our parent 
advocates take classes for a year and learn about policymaking, negotiating, educational law, mental health law, and 
parent/professional collaboration." 

Discussing her growth as an advocate, Teri said, "I remember when I started advocating for my three children and 
how hard it was without negotiating skills and education law knowledge. I felt hopeless at these meeting and agreed 
with whatever they said because I thought they were the professionals and knew what was best for my child." 

"Then I learned educational law. I went into meetings thinking I knew what was best for my child and no one could tell me 
different. Barriers went up so fast that I didn't know what was happening. I didn't accomplish anything with that attitude." 

"Then I learned negotiating skills. I went into meetings with an attitude that we would work together - and the 
barriers started coming down." 

"I would be lying if I said it was a bed of roses. We still have struggles, but with the skills I have acquired, I have the 
strength to go on. Some days, I think about how things should be and how much we haven't accomplished. But a very 
dear friend said to me, 'Stop looking at the gravel road ahead, and look at the road you've paved behind you.'" 



8 



IHBPUW1 



Dressed to Distress? 

By Tara Potterveld, MA, IC/TC, CI and CT, California, 

and Marylouise Lambert, BA, OTC, California 

Copyright VIEWS, Registry of Interpreters for the Deaf. Reprinted with permission. 

"I am a Deaf person who has Usher's Syndrome. I went to a low vision clinic at a prominent research university to 
have my eyes checked. A fair skinned interpreter showed up wearing a shirt that was pink on one side and yellow on 
the other. Needless to say, I could not see the interpreter's hands against this minimally contrasting background. By 
the time my driver ran to the car to get a black jacket for the interpreter to wear, we were twenty minutes late starting 
the appointment." 

This Deaf consumer was justified in her distress, yet interpreters are not the kind of people who go out of their way 
to make the lives of Deaf and Deaf-Blind persons miserable. The interpreters we know are caring, conscientious 
professionals who strive to do a good job in every assignment. Although most Deaf people have good eyesight and 
can tolerate a variety of clothing colors, we should always be aware that low vision and Deaf-Blind people require 
special accommodations. 

The Helen Keller National Center in New York estimates that there are 1 0,000 Deaf-Blind children from birth to 
age 2 1 and 40,000 adults. Some studies estimate there are 700,000 individuals, including elderly people with age 
related disorders, who lose their vision and hearing. The National Technical Assistance Consortium for Children and 
Young Adults Who are Deaf-Blind estimates there are 1 2,000 children and youth who are Deaf-Blind. With numbers 
this high, all interpreters should be prepared to encounter Deaf-Blind consumers in the course of their work. 

Unfortunately, not all interpreters have the pleasure of being guided by the wonderful mentor Virginia Hughes, who 
wisely taught interpreters the value of wearing solid colors that contrasted with their skin. Virginia's contention was 
that, as interpreters, we should make it easy for Deaf people to read our signs. Beginning in the 1 970 's, interpreters at 
California State University at Northridge were required to carry solid colored smocks to wear over their street clothes. 
There is still value in carrying a contrasting garment to each assignment. Too often good interpreters show up to work 
dressed inappropriately for low vision Deaf clients. 

One of the authors of this article was called by an agency at the request of a consumer. The author knew from prior 
experience that this consumer is a person with low vision. The assignment was an event at a "center for the Blind." 
When accepting the job, the interpreter asked the agency to be sure to tell the team interpreter that the Deaf consumer 
had difficulty seeing and needed the interpreters to wear clothing that contrasted with their skin. A week before the 
event, the Deaf consumer called the agency to remind them to tell the interpreters to wear appropriate clothing to 
improve visibility. The day of the event, the team interpreter showed up wearing a dark shirt with a flesh colored 
jumper over it. The Deaf consumer asked if the interpreter "could remove her vest." Unfortunately, since it was a 
jumper, not a vest, removing it would have left her working in her shirt and stockings. Luckily, she wore the same size 
as the other interpreter and was able to borrow a dark jacket for the assignment. This interpreter, a fine professional 
with good skills, felt terrible. The agency had, in this instance, not told her that the consumer had limited vision. 
Although the name of the organization for this assignment should have given the interpreter a clue, many interpreters 
have not had experience working with Deaf-Blind people. 

The range of vision among the Deaf-Blind community varies greatly. Some people are completely without vision 
and don't care if the interpreter wears polka dots and stripes. But many Deaf-Blind people have limited vision. The 
spectrum of differences is broad. Some people with Usher's Syndrome have tunnel vision and can only see the 
interpreter when the interpreter is seated directly in front of the consumer. Good lighting and contrasting clothing are 
vital to communication as is the interpreter's utilization of a smaller signing space. 



0. 











Other consumers with blurred vision may prefer to have the interpreter quite close. A leader in the Deaf-Blind 
community mentioned that she, with optic nerve damage, likes to have the interpreters wear soft solid colors such as 
medium blue or green. A Deaf-Blind consumer who is coordinator of interpreting services at a community college 
states that, "Deaf consumers have a number of common and low incidence vision conditions which cause them distress 
when interpreters unknowingly wear 'inappropriate' clothing for an assignment. Individuals with conditions such as, 
but not limited to, epilepsy and Attention Deficit Disorder, can also be adversely affected by interpreter's clothing." 

Theresa B. Smith in her book, Guidelines: Practical Tips for Working and Socializing with Deaf-Blind 
People, recommends "...if your skin is very dark, you'll want a top that offers as much contrast as possible and at the 
same time reflects as little light as possible. A soft cotton top that is medium to light gray color is generally a good 
choice. A 'not too bright' yellow is good ... If you have very light colored skin, tops that are black or navy blue are 
absolutely the best choice for people with retinitis pigmentosa . . . People with optic atrophy, rubella, or cataracts often 
prefer a brighter color such as aqua blue, emerald green, or even dark pink." (p. 1 1 3) Smith also notes that the 
clothing fabric should be non-reflective, soft rather than shiny, and that "touchy-feely clothes that are tactually beautiful 
are always nice." (p. 1 09) When interpreting for consumers regularly, it is helpful to ask what clothing colors they 
prefer the interpreter to wear. 



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A Deaf-Blind professional who uses interpreters regularly and works with Deaf people who have partial vision 
asked that we also include the following guidelines in this article: 

1 . Please do not use scented products. "I rely on my sense of smell to capture clues about my environment. 
When interpreters use perfume, cologne, or scented hair products, I feel disoriented." Because tactile 
interpreting requires that the Deaf consumer and the interpreter sit in very close proximity, smoking any time 
prior to the assignment should be avoided and good personal hygiene is an absolute must. 

2. Please keep your fingernails short and smooth. "I prefer the interpreters not to use fingernail polish as even 
clear polish reflects light." 

3. "Because of reflected glint and glare, which is distracting, I appreciate when interpreters remove body 
piercings and other jewelry when working with me. Unfortunately, even shirt buttons in strong light can flash 
bits of light to my brain, making it hard to concentrate on the signing." 

4. Wash your hands thoroughly and often. Germs and diseases are easily spread through contact. 



In accepting an assignment, whose responsibility is it to ensure that a low vision Deaf or Deaf-Blind consumer's 
needs are met? We wonder if interpreting agencies could put a note in their database or filing system indicating the 
special accommodations required by each of their clients. One author of this article, after interpreting an assignment for 
a Deaf consumer with whom she had never previously worked, called the agency that had sent her to see if they knew 
that the consumer had limited vision. The director of the agency was surprised. "I have sent interpreters to this 
person's appointments for three years and you are the first one to mention that there are special circumstances. Thank you." 

We are proud to be in a profession where our colleagues put so much effort into developing and enhancing their 
skills. We appreciate the dedication and hard work of all interpreters. Those fine skills are of little use, however, when 
an interpreter arrives at an assignment wearing clothing, jewelry, or nail polish that make it impossible for the Deaf 
person to take full advantage of the interpretation. 

The responsibility for ensuring that a consumer's interpreting needs are appropriately served belongs to the agency, 
the interpreter, and the consumer. If each of these participants assumes responsibility for making the interpreting 
environment the very best possible for the consumer, these special accommodations are more likely to be discussed 
and implemented and true professional service rendered. 

10 



The V.LP.s: Visually Impaired Players and Very Important People 

By Mary Carrilee Adkins, Vision Teacher, North East Independent School District 

and Deborah Thompson, Educational Specialist for the Project for Students 
with Visual Impairments, Education Service CenterRegion 20, San Antonio, Texas 

In the fall of 1998, Rebecca Kilian-Smith, a Teacher of the Visually Impaired in the North East I.S.D. in San 
Antonio, made a suggestion to her colleagues with a resulting impact that many would long remember. She suggested 
that dance classes might be of interest and value to our middle and high school students. A suggestion was made for a 
small group, but the ultimate outcome would affect all students with visual impairments in the Education Service Center, 
Region 20 (ESC Region 20) area. 

WHERE COULD WE START LOOKING FOR A DANCE TEACHER? 

Carrilee Adkins, another North East I.S.D. VI teacher, had taught adult and community education classes for the 
district for many years. She suggested the Adult/Community Education department as a logical place to begin looking 
for a qualified teacher. One name was mentioned - Ms. Pat Wells, dance teacher, judge for international dance 
competitions seen on television, and director of children's theatre. A phone call was made, an appointment kept. 
Soon, not only were ESC Region 20-funded dance classes a reality, but a dream of summer theatre for students with 
visual impairments was born. Pat told us that for several years she had conducted summer theatre camps for sighted 
students, although she had never worked with students who were visually impaired. Still, she was willing and anxious 
to try such a project with our students, making any necessary adaptations and modifications. 

NEXT QUESTION - WHO COULD SPONSOR SUCH A PROJECT? 

It was definitely more than one school district could handle alone. We approached Deborah Thompson, Educa- 
tional Specialist for the Project for Students with Visual Impairments at ESC Region 20. She, in turn, presented a 
proposal to members of the Region 20 Visually Impaired Regional Advisory Committee, who deemed the project 
worthwhile. It was soon realized that additional help with funding was needed. The San Antonio office of the Texas 
Commission for the Blind (TCB) was invited to join the project. Judy Wright, BVIC caseworker, agreed to work with 
us, perhaps not truly realizing all the INTERESTING skills she was about to acquire. 










RATIONALE AND A BUDGET 

Rationale 

Before we could really get started, two major items were needed - a rationale for our project (Chart 1) and a 
budget. Our rationale, or expectations for the project, was based on evaluation of data from informal student surveys 
and Regional Student Performance Indicators. 

In the area of vocational skills, students would be expected to exhibit skills required to maintain a job. These 
included punctuality, problem solving, staying on task, following directions, interaction with others (both peers and 
adults), following a schedule, etc. 

In the area of orientation and mobility (O&M) skills, students would learn safe movement within the theatre 
(particularly on the stage), getting to and from the camp each day, and use of appropriate O&M skills. They would 
also need an understanding of the body concepts required in the performing arts. 

Social skills were emphasized on a daily basis when students were required to exhibit appropriate interactions with 
adults and peers in both large and small group activities. They had to exhibit good listening skills, respect for others, 
and think of ways to involve parents and other family members in the theatre camp. Theatre skills were addressed as 
the students rotated through classes in singing, dancing, acting, and set designing. 

11 



Chart 1 - EXPECTATIONS FOR SUMMER VOCATIONAL SKILLS, 

SOCIAL SKILLS AND THEATRE PROGRAM 

ESC Region 20 



Name: 



D.O.B.: 









s 

PL) 



School District: 



School/Grade: 



Goal: 

The student will master appropriate vocational skills through a summer theatre program at the 9-22 years age level, 

to be measured by participation in a stage production at completion of the program. 

Objectives: 

The student will exhibit appropriate skills required to maintain a job: 

• punctuality • interaction with employer 

• appropriate dress . prompt return from breaks 

• problem solving . follow a daily schedule 

• following directions . time management 

• staying on task . solicit aid 

• organizational skills . storage of materials 

• job completion in timely manner • retrieval of materials 



Goal: 

The student will master appropriate social skills through a summer theatre program at the 9-22 years age level, to be 

measured by participation in a stage production at the completion of the program. 

Objectives: 

• The student will exhibit appropriate interaction with adults and other students in large group activities. 

• The student will exhibit appropriate interaction with adults and other students in small group activities. 

• The student will use appropriate listening skills. 

• The student will exhibit respect for others. 

• The student will communicate appropriately with adults and other students. 

• The student will invite his/her parents to assist Wm/her in activities related to the summer program. 

Goal: 

The student will master appropriate orientation and mobility skills at the 9-22 years age level, to be measured by 

participation in a stage production at the completion of the program. 

Objectives: 

• The student will travel to and from the summer program on a daily basis by means of appropriate transporta- 

tion. 

• The student will use alternate means of transportation when the primary mode of travel is unavailable. 

12 



• The student will make quick decisions regarding alternate means of transportation if the need arises and have 

the necessary funds available to meet the need. 

• The student will use appropriate orientation and mobility skills during the course of the day. 

• The student will use the appropriate orientation and mobility skills while on stage during the program. 

• The student will act responsibly in regard to designated tasks during the program. 

Goal: 

The student will master appropriate pre- vocational skills at the 9-22 years age level in the areas of acting, music, art, 
engineering, clothing manufacturing, carpentry, and commercial painting, to be measured by a stage production upon 
completion of the program. 

Objectives: 

• The student will participate appropriately in drama activities. 

• The student will perform the basic skills required to appropriately apply theater makeup as a pre-vocational 
skill within the performing arts profession. These skills are also basic to the cosmetology industry. 

• The student will perform the basic skills required to appropriately design and create costumes as a 
pre-vocational skill within the performing arts profession. The skills of design, creation, and sewing are 
also basic to the clothing industry. 

• The student will perform the basic skills required for learning to act and speak in public as pre-vocational 
skills within the performing arts profession. These skills are also important for job interviews. 

• The student will participate appropriately in musical activities. 

• The student will perform the basic skills required for learning to sing and dance as pre-vocational skills within 
the performing arts profession. 

• The student will participate appropriately in artistic activities. 

• The student will perform basic skills required to design, create and build theater sets as pre-vocational skills 
within the performing arts profession. The skills of carpentry, drafting, and painting are also basic to the 
construction industry. 











Budget 

Creating a budget was a more difficult task. We did not really know all that was involved with such a project. We 
certainly had no idea about how much money to allow for each aspect of the program. There were personnel costs 
(salaries for HOW MANY people?) and production costs (royalties, Braille, large type, taped scripts, tapes, sets, light 
and sound equipment, rent on the location, air-conditioning, custodians - the list seemed endless). After many hours, 
we finally had a budget that seemed workable and included funding from ESC Region 20, Texas Commission for the 
Blind, and small private donations. 

Our greatest budget expenditure has been for staff. We basically have two different groups of personnel: Certified 
VI teachers / O&M staff, and theatre personnel. Theatre personnel were handpicked by Pat Wells, Director, and each 
is very capable in his/her particular field. They include a music coach, an acting coach, and a dance instructor. Last 
year, we added a sign language interpreter to assist a deafblind student who planned to participate. What a great 
Indian our interpreter made in the production! We have employed two certified VI teachers and two certified O&M 
specialists each summer. They have been real troopers. They really didn't expect to be on stage, but have done a 
terrific job assisting students through all the rehearsals and the final successful performances. We were very lucky to 



13 



have had two O&M interns who provided their expertise without additional cost to us. We owe much to the combined 
talent and perseverance of all these gifted and dedicated people. 

PARENTS PLAY A KEY ROLE 

We have been very excited by the parental involvement each summer. Parents brought their children each day, 
provided lunches, helped make costumes, applied makeup on performance night, assisted with serving refreshments at 
the cast party, gave words of encouragement to the staff, and in general were a very positive influence throughout both 
of our camps. We would never be able to have a successful camp without these fabulous parents. 

LOCATION, LOCATION, LOCATION! 

As every business person knows, location is everything. It seemed simple enough. Little did we know that it would 
become our greatest challenge. Not just for one year, but for each year that we have worked on this project. Just as 
we had solved a problem, other potholes occurred in the road we thought was so smoothly paved the year before. 
Finding a site for our project involved much more than we had ever imagined - liability insurance, accident insurance, 
air-conditioning, custodians on a daily basis (as well as prolonged service on the day of the final performance), parking 
lot security, lighting and sound equipment, a stage, musical instruments, practice and classroom space, restrooms, a 
place for lunch each day, tech personnel to operate equipment, appropriate stage equipment, and on and on. We have 
used the North East School of the Arts theatre for the last two years and hope to do so again this next summer. Their 
facilities have been ideally suited to our needs, and their staff has been very helpful and accommodating. 

TIME TO INVITE THE STUDENTS 

Once all of the above tasks were accomplished, it was time to invite the students. Thanks to the efforts of the VI 
teachers in the San Antonio area, we were able to enroll our first group of V.I.P.s - twenty-one students from ten 
different school districts in Region 20. The "Wizard of Oz" was our first great success for students, parents, camp staff, 
and guests. Our second production in the summer of 2000 was "Peter Pan." This camp differed from our first in that 
we permitted our VI students to invite a sighted friend or sibling to participate. We had several visually impaired 
students who returned from the year before. What a delightful experience everyone had. 

THE REVIEWS ARE IN 

The results have been phenomenal! The most significant gains in student performance were seen in acting and 
public speaking. By the end of each two-week camp, all students were able to project their voices and recite lines from 
memorization with 80% or better accuracy. Perhaps the most impressive student achievements that were not mea- 
sured formally were in the areas of peer relations and self-confidence, especially in those students who attended the 
first camp and then returned for the second summer. Shy students became some of our best actors and actresses and 
were outstanding role models for first-time participants. Students who were afraid to speak above a whisper were 
belting out songs with all their hearts. Students who had never had a close friend before were exchanging phone 
numbers with other students (both VI and non-VI). 

It is difficult to measure these skills. However, in conversations with the children and families during and after the 
camps, we have determined that these positive effects prove to be lasting. Friendships that blossomed during the 
camps have been maintained through telephone calls, letters, and e-mails. One mother called recently and said that her 
child's experiences in the camp had led her to try out for her campus' drama group. We are happy to report that this 
very talented young lady is now a part of that group and performing extremely well! 

Positive results as noted by the parents include: "meeting more friends outside his small circle of friends;" "helps 

Mom realize there are many things in life available for my son;" "he [son] was proud to be given responsibility of apart 

when he didn't expect it;" and "she [daughter] looked forward to going every morning." We appreciate all of the 

feedback and kind remarks. 

14 



STILL SOME CHALLENGES FOR THE FUTURE 

There are still some problems that need to be resolved - daily transportation has been our toughest nut to crack. 
We have primarily relied upon parents and VIAtrans, San Antonio's door-to-door transportation system. San Anto- 
nio I.S.D. has provided a school bus for their students both years. We hope to expand bus service by asking other 
districts for their assistance in arranging transportation for their students. 

There is still much to learn. Each year is a new experience. Everyone involved has learned something they didn't 
know before. Judy Wright probably never dreamed that she would be communicating with big New York production 
companies for the rights to produce our plays. She certainly did not expect to become an insurance agent or leasing 
agent. Ask her to bend your ear sometime about contract negotiation. The VI staff learned more about the theatre, 
and the theatre staff learned more about making adaptations and modifications for students who are blind or visually 
impaired. VI students and students with normal vision learned how to work and play together. They also learned how 
important each and every person is to a successful production. Exhaustion and fatigue have nearly overwhelmed us at 
the end of each camp. However, we come away each time with a deep sense of satisfaction and gratitude for having 
been privileged to work with these groups of truly talented and wonderful students and to celebrate their tremendous gains. 

Plans are already underway for the next camp. Meetings with Connie Pressler, Regional Director for Texas Com- 
mission for the Blind in San Antonio, and Judy Wright, have begun. We're on a fast and furious time schedule to 
facilitate our Summer 2001 production. Permission has been requested to produce "Cinderella." We are negotiating 
for our prime location. If you're in the San Antonio area on July 2 1 , 200 1 , stop by and watch our kids in action - you'll 
be in for a spectacular treat! 






What is the Expanded Core Curriculum 
for Blind and Visually Impaired Students? 

By Cyral Miller, Director of Outreach, Texas School for the Blind and Visually Impaired 



o 



At this time of year, many families and professionals are beginning to prepare for their annual IEP meetings. As you 
know, team members gather to review assessment on the current progress of each student enrolled in special educa- 
tion, and jointly determine future priorities and programming. Often parents are unsure whether the programs offered 
to their children are truly appropriate. They may not feel confident that they know what to advocate for, especially 
beyond typical academic coursework. Each family knows that a visual impairment affects multiple aspects of their 
child's life, but some families may not be able to articulate how those differences can or should be addressed by the school. 

The National Agenda for Blind and Visually Impaired Children and Youths, Including Those with Additional Dis- 
abilities, is a national project aimed at achieving eight priority goals for improving the quality of educational services for 
students with visual impairments. (More information on the National Agenda and a full copy of the article excerpted 
below can be found at <www.tsbvi.edu>.) For parents to be full partners in the educational process, they must be 
knowledgeable about the kinds of programming that is appropriate for their children. Goal 8 states that instruction 
should reflect the assessed needs of each student in all areas of academic and disability-specific core curriculum. 
These areas of emphasis have also been called the expanded core curriculum, and reflect an agreement within the 
educational field that areas beyond academics must be addressed within a comprehensive educational program. As- 
sessments in all areas that determine each child's strengths and weaknesses can be used to help families and educa- 
tional staff build a program together that truly addresses life-long competencies. 

In 1 996, Dr. Phil Hatlen wrote a description of the core curriculum for the National Agenda. Excerpts of his article 
are included below (full text is found at <www.tsbvi.edu> ). 



15 






Educators define "core curriculum " as the knowledge and skills expected to be learned by a student by high 
school graduation. Generally, the core curriculum consists of knowledge and skills related to academic sub- 
jects. Mastery of the core curriculum is what both parents and teachers stress as essential for academic 
success in school, and later in life. . . This core curriculum becomes the foundation for almost all learning, from 
kindergarten through high school. With respect to blind and visually impaired students, the existing core 
curriculum, as developed for sighted students, is entirely appropriate and generally available. Because educa- 
tors of visually impaired students have developed expertise in curriculum adaptation, it should be possible to 
take any curriculum that has been developed and make it readily available for visually impaired learners. 

But most professionals hold a strong position that there is an expanded core curriculum for visually im- 
paired students that requires additional areas of learning. 

There are experiences and concepts casually and incidentally learned by sighted students that must be 
systematically and sequentially taught to the visually impaired student. The core curriculum for visually im- 
paired students is not the same as for sighted students. Indeed, it is much larger and more complex. 

The existence of special needs, or a unique core curriculum for blind and visually impaired students, has 
been known for years. References to the subject of grooming skills date back as far as 1891. . . 

Although states determine the content of the core curriculum individually, most states demand that compe- 
tencies in basic subjects be mastered. The following example incorporates these basic subjects and adds the 
expanded core curriculum for visually impaired students: 

THE CORE CURRICULUM FOR BLIND AND VISUALLY IMPAIRED CHILDREN AND YOUTHS 



The Existing Core Curriculum 

• English language arts, other languages, 

to the extent possible 

• mathematics science 

• health, physical education 

• fine arts 

• social studies 

• economics, business education 

• vocational education 

• history 



The Expanded Core Curriculum 

• compensatory or functional academic 
skills, including communication modes 

• orientation and mobility 

• social interaction skills 

• independent living skills 

• recreation and leisure skills 

• career education 

• use of assistive technology 

• visual efficiency skills 



A short description for each of these areas of expanded core curriculum follow: 

Compensatory or Functional Academic Skills, Including Communication Modes 

(Note: for this area of the expanded core curriculum for blind and visually impaired students, a distinction 
must be made between compensatory skills and functional skills. Compensatory skills are those needed by 
blind and visually impaired students in order to access all areas of core curriculum. Mastery of compensatory 
skills will usually mean that the visually impaired student has access to learning in a manner equal to that of 
sighted peers. Functional skills refers to the skills that students with multiple disabilities learn that provide 
them with the opportunity to work, play, socialize, and take care of personal needs to the highest level possible.) 



16 



Compensatory and functional skills include such learning experiences as concept development, spatial 
understanding, study and organizational skills, speaking and listening skills, and adaptations necessary for 
accessing all areas of the existing core curriculum. Communication needs will vary, depending on degree of 
functional vision, effects of additional disabilities, and the task to be done. Children may use braille, large 
print, print with the use of optical devices, regular print, tactile symbols, a calendar system, sign language, 
and/or recorded materials to communicate. Regardless, each student will need instruction from a teacher with 
professional preparation to instruct students with visual impairments in each of the compensatory and func- 
tional skills they need to master. . . 

Orientation and Mobility 

As apart of the expanded core curriculum, orientation and mobility is a vital area of learning. Specialists 
who have been specifically prepared to teach orientation and mobility to blind and visually impaired learners 
are necessary in the delivery of this curriculum. Students will need to learn about themselves and the environ- 
ment in which they move -from basic body image to independent travel in rural areas and busy cities. . . The 
expanded core curriculum must include emphasis on the fundamental need and basic right of visually impaired 
persons to travel as independently as possible, enjoying and learning from the environment through which they 
are passing to the greatest extent possible. 

Social Interaction Skills 

Almost all social skills used by sighted children and adults have been learned by visually observing the 
environment and other persons, and behaving in socially appropriate ways based on that information. Social 
interaction skills are not learned casually and incidentally by blind and visually impaired individuals as they are 
by sighted persons. Social skills must be carefully, consciously, and sequentially taught to blind and visually 
impaired students. . . 










Independent Living Skills 

This area of the expanded core curriculum is often referred to as "daily living skills. " It consists of all the tasks 
and functions persons perform, in accordance with their abilities, in order to lead lives as independently as possible. 
These curricular needs are varied, as they include skills in personal hygiene, food preparation, money management, 
time monitoring, organization, etc. . . The skills and knowledge that sighted students acquire by casually and 
incidentally observing and interacting with their environment are often difficult, if not impossible, for blind and 
visually impaired students to learn without direct, sequential instruction by knowledgeable persons. 



Recreation and Leisure Skills 

Skills in recreation and leisure are seldom offered as apart of the existing core curriculum. Rather, physical 
education in the form of team games and athletics are the usual way in which physical fitness needs are met for 
sighted students. Many of the activities in physical education are excellent and appropriate for visually im- 
paired students. In addition, however, these students need to develop activities in recreation and leisure that 
they can enjoy throughout their adult lives. . . The teaching of recreation and leisure skills to blind and visually 
impaired students must be planned and deliberately taught, and should focus on the development of life-long skills. 

Career Education 

There is a need for general vocational education, as offered in the traditional core curriculum, as well as the 
need for career education offered specifically for blind and visually impaired students. Many of the skills and 
knowledge offered to all students through vocational education can be of value to blind and visually impaired 
students. They will not be sufficient, however, to prepare students for adult life, since such instruction assumes a 
basic knowledge of the world of work based on prior visual experiences. . . Because unemployment and underem- 
ployment have been the leading problems facing adult visually impaired persons in the United States, this portion of 

17 












8 



#*e expanded core curriculum is vital to students, and should be part of the expanded curriculum for even the 
youngest of these individuals. 

Technology 

Technology is a tool to unlock learning and expand the horizons of students. It is not, in reality, a curriculum area. 
However, it is added to the expanded core curriculum because technology occupies a special place in the education 
of blind and visually impaired students. Technology can be a great equalizer. For the braille user, it allows the 
student to provide feedback to teachers by first producing material in braille for personal use, and then in print for 
the teacher, classmates, and parents. It gives blind persons the capability of storing and retrieving information. It 
brings the gift of a library under the fingertips of the visually impaired person. Technology enhances communication 
and learning, as well as expands the world of blind and visually impaired persons in many significant ways. Thus, 
technology is a tool to master, and is essential as apart of the expanded core curriculum. 

Visual Efficiency Skills 

The visual acuity of children diagnosed as being visually impaired varies greatly. Through the use of thorough, 
systematic training, most students with remaining functional vision can be taught to better and more efficiently 
utilize their remaining vision. The responsibility for performing afunctional vision assessment, planning appropriate 
learning activities for effective visual utilization, and instructing students in using their functional vision in effective 
and efficient ways is clearly an area of the expanded core curriculum. Educational responsibility for teaching visual 
efficiency skills falls to the professionally prepared teacher of visually impaired learners. 

As teams prepare for the ARD process, a thorough look at each visually impaired child's level of performance in 
each of the areas of the core and expanded core curriculum can yield valuable information on which to base recom- 
mendations for the next year's programming. Not all areas will have equal urgency each year, but to make informed 
decisions on where to focus, it is essential to measure progress and functioning across all areas. Families and profes- 
sionals working together can and should prioritize needs in order to develop an appropriate and comprehensive 
educational program for the visually impaired student. 



Stepping Over Thresholds: 
Transitions for Children and Youth with Visual Impairment 

By Dr. Natalie C. Barraga, Professor Emerita, The University of Texas at Austin 

From birth throughout life babies, children, and youth with visual impairment have numerous challenges and transi- 
tional stages as they develop and learn. We might consider these as thresholds they must "step over" if they are to 
utilize their functional vision to the maximum. Team members involved at various stages, the variables to be considered, 
and decisions to be made, change as the challenges increase. In the early years, parents, with other team members, are 
responsible for providing the opportunities for visual development and visual learning. As progress is made and the 
child becomes more responsible, the focus changes. The child's involvement in educational and personal decisions 
gradually increases over time. 

Let's take a look at six typical transitional stages, the team members who are involved at each stage, and the 
variables to be considered as crucial decisions are made. 



STAGE 1 - INFANTS AND PARENTS FROM (BIRTH TO 2 YEARS OF AGE) 

Initially, parents are dealing with emotional issues such as shock, trauma, and grief associated with the first diagnosis 
of visual impairment. There is much confusion and uncertainty in their thinking. Gradually they begin to understand and 

18 



to accept the reality of the situation. Their next threshold is to begin seeking information through support systems, 
reading, and training. In Texas, parents will connect with the Early Childhood Intervention (ECI) program to help them 
navigate through their child's earliest years. 

Medical and clinical personnel (preferably pediatricians, pediatric ophthalmologists and low vision specialists) are 
responsible for diagnostic information. This includes describing the structure and condition of the internal parts of the 
eye and any possible medical/surgical interventions. They will also prescribe glasses, contacts, or other optical de- 
vices. It is desirable for there to be frequent monitoring of the health of the eye and retina, as well as, noting any changes 
in visual behavioral responses. This is especially critical since there is no way to measure just how much useful vision 
may develop. 

Teachers of the visually impaired (TVI) are the next individuals to join the team. They are brought in by the ECI 
program to help establish eligibility for specialized vision services and become part of the Individual Family Service 
Plan. Their challenge is to evaluate functional vision use, establish communication and rapport with the parents, 
provide positive support to the IFSP team, and interpret clinical information. The TVI will also try to answer questions 
from the team or refer them to appropriate people or reading material. During home visits they will model teaching 
techniques for the parents. The TVI should also provide written information to help the parents learn how to work with 
their child. This includes learning to emphasize tactual, visual, and auditory stimulation; name objects; imitate sounds 
and actions, and encourage and structure body movements. (Remember that babies will have only limited, if any, 
imitative abilities at this age.) There are many resources on the unique techniques needed by babies with low vision 
which the TVI can offer families during this stage . Some are available on tape, others in print, and still others on the 
Web. There is also much for the parents to learn just by meeting other families. 

Certified orientation and mobility specialists (COMS) begin to teach orientation to touch, sound, and visual 
objects when children are about 6 months old . They may offer checklists of activities to help guide parent/child 
interactions. These professionals model ways to teach reaching, sitting alone, and crawling. Later on, they will focus 
on strategies to encourage walking. Other instruction provided by the COMS includes teaching body parts, body 
positioning, spatial concepts, and body movements. They may encourage parents to keep ajournal documenting each 
new voluntary movement and behavior that indicates how the child uses his/her vision. 

Blind and Visually Impaired Children's Program (B VICP) caseworkers from the Texas Commission for the Blind 
(TCB) are also brought in at an early stage and stay involved throughout a student's educational life. Their role is to 
help parents access resources and learn about their role in the educational, health and human services systems. 

Others may also be added to the team, coordinated through ECI. These include: a social worker, to make parents 
aware of, and help them obtain, resources; a neurologist, in the event of noticeable movement deviations; physical, 
occupational, and/or speech specialists who may need to address additional disabilities; and/or a low vision specialist 
to teach parents about encouraging their child's use of vision. 

STAGE 2 - TODDLERS AND PRESCHOOLERS (2-4 YEARS OF AGE) 

This is the stage when the child is striving for independence in all areas. Parents (or primary caregivers) are still the 
critical members of the team. Their primary decision is to determine who gives the major care during the day: parents, 
another family member, or day care. This is the stage when the child requires one-on-one teaching of skills. A large 
focus is placed on language learning. Decisions need to be made about whether there is exclusive home teaching or a 
blend of home teaching and center-based teaching. The parents must find out what options are available in their 
community such as a regular daycare, a preschool, a public school-based classroom for children with disabilities or ( in 
larger districts) a special class for children with impaired vision. Family needs outside of the educational arena continue 
to be supported primarily by ECI (until age 3) and the BVICP caseworker from TCB. 

19 











rr 



Medical /clinicians are still key members of the team at this stage. Typically they will be encouraging regular visits 
to monitor stability of the eye condition and assess visual responses. It is important for them to invite reports from 
parents and teachers about the child's visual behavior. These professionals will continue to evaluate lenses and/or 
optical devices for their appropriateness. 

The TVI will help determine the amount of vision-specific services needed to fully support the young child's learn- 
ing. However, at this point, preschool teachers often begin to be the leaders for daily learning development and 
diagnostic assessment, working with parents, the TVI, and clinicians. The challenges for the team are to select and 
utilize appropriate magnification (when needed); work on major cognitive skills such as language development and 
story telling; provide stimulation of all senses; develop gross and fine motor activities; establish cognitive concepts; and 
encourage increasing independence and responsibility. 

The COMS focuses on sensory orientation skills associated with movement. He/she will also work to increase the 
scope of gross motor skills and some fine motor skills, such as protective techniques, trailing, sighted guide, etc.. The 
COMS may also introduce mobility devices for independent movement such as a variety of push objects and later the cane. 

Playmates become important team members at this time. At first they engage in parallel play, then model imitative 
play and other movement actions. They become teachers when there is partnership in activities such as running, 
hopping, skipping, and jumping. Language interaction stimulates curiosity. It becomes a motivating force for explora- 
tion and engagement in the world beyond the child's visual and tactile reach. 

STAGE 3 - KINDERGARTEN, 1ST AND 2ND GRADE (5-7 YEARS OF AGE) 

This stage occurs from about 5-7 years of age and involves many of the same team members as the previous stage 
with a few additions. Parents, in consultation with teachers, have important placement decisions to make . Should the 
child attend regular or special kindergarten? Is the child is ready to begin regular schoolwork? And later on, does the 
most appropriate placement mean a regular class with a TVI available as needed, a resource room with a TVI as 
needed, a self-contained class with TVI support, or a special school for the blind? The child's visual status is not the 
sole determinant in making these decisions. One placement may be appropriate at first, and another later on. The 
placements may be short-term (such as in a residential school) or long-term, depending on the progress and needs of 
the individual. 



At home the parents are challenged to encourage more independence and greater responsibilities in personal and 
home activities. Texas Commission for the Blind staffmay provide resources to support family growth. Play oppor- 
tunities with peers are especially critical. Children need time with parents to communicate about activities and incidents 
of the day, to ask questions, and receive open and candid answers. By this stage children should know exactly what 
their visual condition is; how to explain it to peers and teachers; how to advocate for their visual needs; and how to ask 
for assistance when necessary. Children who are using any special equipment or devices need to be able to explain 
what they are for and how they make work more efficient. They may even need to be able to oversee their peers 
experimenting with magnifiers or telescopic devices. Children also need to be able to politely refuse offers of help 
when it's not needed, and to accept help graciously when it is necessary. 

The educational diagnostician becomes a member of the team and collaborates with the TVI to assess visual, 
auditory, and tactile concepts; evaluate gross and fine motor coordination; assess receptive and expressive language 
skills; and note any sensory preferences by evaluating their efficiency. In some cases he/she may be asked to admin- 
ister educational test measures and, if indicated, to give group or individual intelligence tests. Typically standardized 
tests must be modified for children with impaired vision. Both the TVI and educational diagnostician share responsibil- 
ity for interpreting results and sharing them in a sensitive manner with parents and teachers. It is this information that will 
serve as the foundation for development of the individual educational plan (IEP). 

20 



Team members encounter many thresholds in these early years. Parents and the TVI especially should be in 
constant communication with each other regarding placement decisions and the educational plan's content. Special 
vision skills training may be incorporated as a part of the school day or scheduled after school or on weekends. 
Special skills in the classroom include teaching handwriting (preferably cursive) and introduction of all primary learning 
media - visual, tactual, and auditory. Training in all learning media continue, without exclusion of any one, until the 
student shows a clear preference for, and efficient use of, one or two media. Another skill focused on at this time is 
the proper use of magnification devices, monoculars, and other non-prescriptive and prescriptive devices. Classroom 
independence and responsibility are also emphasized during this stage. 

The COMS is also challenged by many thresholds during this stage. These include teaching skills such as: traveling 
independently in the school building or local neighborhood; learning how to locate one's self in space using landmarks 
and directionality; learning how to use the monocular for distance orientation and location; understanding safety fac- 
tors; and developing or perfecting cane travel if needed. 

The low vision therapist or specialist is responsible for evaluating and improving the use of optical devices (magni- 3 
fiers and monoculars). He/she may show parents how to encourage the child's use of vision in personal care and home 



activities. Use of residual vision is not just for the classroom, but should also be encouraged in everyday living at home 
and in the community . 

Medical/clinical team members continue to receive reports from parents, teachers, low vision specialists/therapists, 
the TVI and COMS. They continue to monitor the condition of the child's visual system, and suggest any safety 
cautions or activity limitations. They will also continue to check on the appropriateness of prescriptions for lenses and 
optical devices. 

STAGE 4 - ELEMENTARY SCHOOL (8-12 YEARS OF AGE) 

This is a crucial time for students and for all members of the team. It is a time when many issues and decisions 
require communication and cooperation between the team members who all have unique and corporate responsibili- 
ties. Parents, the child with visual impairments, TVIs, COMs, classroom teachers, Texas Commission for the Blind 
staff, peers, and others share this responsibility. The key challenge is placing the learning scope and efficiency of the 
students as a priority. This helps ensure the child's progress to greater levels of decision making and independence in 
learning and in preparation of school work. Placement changes may be indicated. The child may return from special 
school or move to a new placement in a special school for short or long periods. If the team chooses placement in a 
local school, will regular class placement be part time or full time? Is a resource room with a specially trained teacher 
available, or is the vision teacher available on an itinerant basis? Does the child need a self-contained setting? The 
parents and local district must collaborate on the decision. 

The next major threshold relates to continuing assessment of the appropriate learning media Will it be visual or will 
it be tactual supplemented by auditory learning? Will both tactual and visual skills continue to be developed, according 
to the child's efficiency and endurance? Perhaps tactual skills should be emphasized, supplemented by selected visual 
and auditory materials. As soon as the primary learning medium/media have been selected, formal listening skills are 
introduced. This is especially important in the later years, so appropriate additional reading material can be made available 
for listening. Once braille and/or print skills are well established, listening in recreational reading activities is introduced. 

If the student uses visual materials, another factor to consider is how the student will access them. Does he/she 
need regular print with appropriate magnification (stand or hand held magnifiers, CCTVs, etc.) or large print? The 
clinical low vision specialists may evaluate the child for appropriate use of low vision aids or glasses. The TVI performs 
a functional visual evaluation to determine how these devices will be used in the classroom and for what purposes. For 
example, a student with severe low vision may wish to use the CCTV for practicing handwriting or looking up a word 

21 



















a 

04 



in the dictionary, but not as their primary reading device. If that is the only device which enlarges print sufficiently for the 
student to see, then that student should use braille as his/her primary reading medium. New skills to teach include 
typing and keyboarding for the computer, along with training in the use of the abacus and calculator. Listening skills are 
added as other learning become more efficient. 

Another critical threshold is the acquisition of social skills that enhance communication and interaction with class- 
mates, teachers, and other adults. The child must continue to increase his/her ability to express thoughts, needs, 
wishes, and concerns that lead to more independence and greater responsibilities at school, at home, and in the 
community. These skills are needed for successful leisure and recreational opportunities. Each year new social skills 
are practiced until they become second-nature to the student who is preparing for middle and high school programs. 

STAGE 5 - MIDDLE AND SENIOR HIGH SCHOOL (12-18 YEARS OF AGE) 

Some of the same team members are still present in the early and later teen years , and others are usually added as 
educational curriculum takes on a broader scope of academic, vocational, and job-seeking considerations. Peers and 
other family members, classroom teachers, TVIs and COMs will be joined by a transition counselor from the Texas 
Commission for the Blind, other human service providers, and/or job coach. This is the stage in which there is 
refinement of personal and academic skills. The student learns to acquire, evaluate, and use information and organize 
data. He/she learns to select, use, and maintain equipment and tools, including technology. Personal and vocational 
goals start to be set. It becomes more important for the young adult to analyze and solve problems more indepen- 
dently at school, home, and in the community. Personal and behavioral values, such as honesty about his/her visual 
condition related to peer pressure, are also developed. Job-seeking skills are emphasized and he/she begins to perform 
volunteer and/or paid work. 

As these skills are learned, more family members may be included on the team. For example, siblings and other 
relatives may begin to assume roles in planning. Consultation with career or job counselors may be beneficial, in order 
to learn about future career possibilities. Students will want to acquire adult mentors with visual impairments as realistic 
support persons. There is a need to become aware of what work is and what kinds of jobs are available. We want the 
student to demonstrate good work habits such as following instructions, assuming responsibility for oneself and pos- 
sessions, meeting time schedules, and staying on task. Other competencies for the student to explore include time 
management, adjusting to greater academic and personal responsibilities, mastering a broader range of adaptive skills, 
conducting interviews, and entertaining and implementing more complex ideas. 

Peers may have a strong influence in these years. Students continue to learn about values, standards of behavior, 
and how to interact and communicate with others. As the young adult seeks to express his/her growing independence, 
respect for parents and other adults often presents some challenges. The student (and his/her parents) will appreciate 
learning skills that compensate for the inability to drive. Extracurricular activities such as clubs and sports may give a 
boost to self-esteem and an identity unique to the individual. 

STAGE 6 - TRANSITION TO ADULTHOOD (18 YEARS AND BEYOND) 

Because skills build over time, many team members become less involved, although they stay connected. The 
young adult, rehabilitation counselors, COMs, adult models, evaluators, peers, and family become the primary team 
members. Team members begin to focus on what happens next, outside the public school arena. 

If the individual has additional physical, mental, and/or emotional disabilities, identifying the proper work and living 
situation becomes a priority. Should the individual live in a group home, in his/her parents home or in an apartment? 
What types of support programs, such as Medicaid waivers and Master Pool Trusts will need to be accessed? Will a 
job coach be needed, or will the individual be involved in a day activity center program? 



22 



If the young adult does not have additional disabilities (i.e., his/her primary challenge is a visual impairment), then the 
threshold decisions may be less complicated. The questions he/she will be asking, with support from the team, are 
more like those asked by his/her typical peers. Is further education appropriate, needed and desired? If so, will it be 
trade school with future placement in an apprenticeship or vocational trade? What skills are needed and can they be 
acquired? If junior college is selected, will the focus be on an academic curriculum leading to additional schooling at 
a university? Will the focus be training in a specific skill, or a variety of related skills, such as those needed to be a 
teacher's aide, child-care worker or small business owner? 

When a professional career is deemed to be appropriate, then a university setting is the choice. Previous career 
planning should have determined the career best suited to the individual. Of course, this decision should be the result 
of a careful evaluation of interests, abilities, skills, work habits, independence, and responsibilities. 

Whatever career choice is made, job skills such as job seeking and interviewing, management of work responsibili- 
ties, networking and communication need to be refined. Increased sophistication in human relations and greater 
maturity of thoughts and actions in decision making are also needed. Self-evaluation of personal and work skills, 
realistic life planning, self-advocacy and self-confidence also take on increased importance. 

Living arrangements should be selected on the basis of personal and daily living skills, self-direction, travel skills and 
transportation needs, and economic considerations. Decisions must also be made regarding independent travel. If he/ 
she wants a guide dog, an orientation and mobility evaluation will be necessary. The COMS will need to see where he/ 
she lives, and evaluate safety factors, level of responsibility and personal preference. An individual who wants a guide 
dog must also be a skilled cane user for those times when using a dog is not appropriate. 



Someone who has learned all the skills necessary to step over these thresholds, should grow up to be a visually 
impaired adult who can approach and respond to all people with ease and comfort. They will be a person who is 
confident, comfortable with his/herself. Someone who has a curiosity to enter new activities and a willingness to accept 
limits and routines. They will respect the feelings and rights of others, set personal goals, make life plans, and reach 
desired standards. This individual will be someone who accepts the consequences of mistakes without asking for 
favors or making excuses; an active participant in the future. 



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Clarifying a Point about Fetal Alcohol Syndrome 

By Cheri Scott, Parent and Family Specialist, Alaska Dual Sensory Impairment Services 



o 
o 



After reviewing the information included in the Fall 2000 issue of SEE/HEAR on Fetal Alcohol Syndrome (FAS) 
and Fetal Alcohol Effect (FAE), I feel like I need to clarify one point. Individuals affected by FAE can have neurologi- 
cal difficulties just as severe or worse than those who are diagnosed with FAS. The difference is that FAE doesn't 
include the cranio-facial abnormalities and growth retardation. When that is the case, the neurobehavioral difficulties 
can be easily misdiagnosed or not diagnosed at all. Because the child does not have any obvious disability, families and 
service providers interpret these behaviors as non-compliance or laziness, or come to think of the child as just a "bad 
kid." This, of course, can lead to a multitude of secondary disabilities (as documented by Dr. Ann Streissguth). Her 
study showed that a child with FAS was more likely to be identified at a younger age than a child with FAE. As a result, 
the FAS child and family received intervention and support earlier, resulting in more positive lifelong outcomes. 



O 



I want to thank you again for sharing our story with educators, service providers and families in your state. Every 
time we bring this topic out into the open we get one step closer to ending the nightmare of prenatal alcohol exposure 
in our communities. 



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Neurological Visual Impairment 

Also Known as: Cortical Visual Impairment, 

Delayed Visual Maturation, Cortical Blindness 

By Sam Morgan, Education Specialist 
Fact Sheet reprinted with permission from California Deaf-Blind Services 

Neurological Visual Impairment (NVI) is now the preferred name for a type of vision impairment that has been and 
is still referred to as Cortical Visual Impairment or Cortical Blindness. NVI is now divided into three categories: 
Cortical Visual Impairment, Delayed Visual Maturation, and Cortical Blindness. These divisions are made according 
to what area of the brain has been effected. 

A variety of studies indicate that the percentage of children with vision impairments who have NVI is between 3.6 
and 2 1 %, making it the major cause of vision impairment in children who are deaf-blind. NVI occurs when the pan of 
the brain that is responsible for seeing is damaged. In other words the eye itself is normal, but the brain does not 
process the information properly. NVI has a variety of causes, including, but not limited to, lack of oxygen before, 
during, and after birth, viral or bacterial illness such as meningitis and cytomegalovirus, or traumatic brain injury. These 
children can but do not always have additional disabilities. Other types of vision impairments such as optic atrophy 
(defect of the optic nerve resulting in the inability of the nerve to conduct images to the brain) and optic nerve hypopla- 
sia (a vision impairment caused by a congenital defect of the optic disk) are more common in children with NVI. 

NVI effects vision in a variety of ways and causes vision loss that can be from mild to severe, temporary or 
permanent. There is no way to predict what a young child's vision will be like as they mature but many children with 
NVI experience improvement in their vision. Fluctuating vision is common. This is most pronounced in children with 
seizure disorders or in those on certain medications such as Dilantin, Tegretol, or Phenobarbital. A child may be able 
to see an object one day and be unable to the next. These children may also have better peripheral than central vision 
and thus look at objects out of the side of their eye. They may have visual field losses that are not symmetrical (one eye 
may be worse than the other). This uneven loss does not necessarily correspond to hand function. If the left eye is 
better than the right, the left hand is not necessarily stronger than the right. 

Children with NVI experience problems with specific types of visual tasks. They have difficulty with figure-ground 
(seeing an object instead of the background), and with complex visual displays such as cluttered pictures (a picture of 
five different animals instead of two). Spatial confusion is common; for example being unable to locate their chair even 
though they can see it. They may also be visually inattentive, not wanting to look at objects, and may prefer their sense 
of touch. It is common to see a child turn his/her head away as they explore an object with their hands. Seeing with 
NVI can be compared with trying to listen to one voice in a noisy room or to speaking a foreign language. 

Vision stimulation is proven to help most children with vision impairments improve the way they use their vision; this 
is especially true of children with NVI. For vision stimulation to be effective it needs to happen in everyday real life 
situations, not only in therapy sessions. Identifying colors in an activity, visually tracking their classmate as they move 
across the room, and identifying the shape of every day objects are examples. 

SUGGESTED INSTRUCTIONAL STRATEGIES FOR CHILDREN WITH NVI 

1 . Materials, such as pictures, should be simple in form, high contrast (the colors of a picture or object should 
be different such as a yellow toy against a black background instead of an orange one), and presented one at 
a time. 

2. Bright lighting can help a child see and attend to visual materials more consistently. Adjust the light both natural and 



24 



artificial to determine what is best. Controlled incandescent lighting may be better than fluorescent lighting. 

3 . Give the child time to respond to the materials that are being presented. 

4. Color vision is usually intact, and color can be used effectively. Yellow and red are possibly easier to see 
and can be used to outline numbers, letters, or pictures, to color code, or to attract attention to something you 
want the child to look at. 

5 . It is also important to keep the color of materials constant to avoid confusion. This also applies to visual 
cues in general which should also be consistent over time and location. If the child uses a red bowl at home 
and this is how he knows it is time to eat then the same should be done at school. Watch to see if the child 
has a preference for size or color. 

6. Use a multisensory approach such as pairing an object that you want them to see with a sound. 

7. Touch should be considered as a major sense for learning. Children with NVI appear to learn effectively 
through this sense. 

8. Repetition and routines can help the child understand their visual environment. If changes are needed make 
them slowly to allow time to adjust. 

9. Fluctuations in visual performance can be limited by reducing fatigue. Try working in short spurts, or divide a 
long task into shorter periods. 

1 0. Reduce outside noise and other environmental stimulation that may distract the child. 

1 1 . Objects can be more easily seen when they are moving. This is especially true when they are in the periph- 
eral fields. 

12. Positioning is also important. The more energy being expended on holding yourself up the less can be used 
for seeing. 

1 3 . Language helps a child to understand a visual situation by adding meaning to it. Be consistent in the lan- 
guage you use. 

REFERENCES 

Groenveld, M, Jan, J.E, & Leader, P. ( 1 990). Observations on the Habilitation of Children with Cortical 
Visual Impairment. Journal of Visual Impairment and Blindness, 84, 11-15. 

Levack, N. (1991). Low Vision: A Resource Guide with Adaptations for Students with Visual 
Impairments. Austin: Texas School for the Blind. 

Morse, M.T. (1 990). Cortical Visual Impairment in Young Children with Multiple Disabilities, Journal of 
Visual Impairment and Blindness, 84, 200-203. 

Takeshita, B. ( 1 996, March). Neurological Visual Impairment. Paper presented at the annual 
conference of the California Transcribers and Educators of the Visually Handicapped. 

Fact sheets from California Deaf-Blind Services are to be used by both families and professionals serving 
individuals with dual sensory impairments. The information applies to students 0-22 years of age. The pur- 
pose of the fact sheet is to give general information on a specific topic. More specific information for an 
individual student can be provided through individualized technical assistance available from CDBS. The fact 
sheet is a starting point for further information. 



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Central Auditory Processing Disorder and Auditory Neuropathy 

By Jim Durkel, Audiologist and Statewide Staff Development Coordinator, TSBVI, Outreach 
with help from Kate Moss, Family Support Specialist, Texas Deafblind Outreach 

I recently responded to a question about the difference between Auditory Neuropathy and Central Auditory Pro- 
cessing Disorder (CAPD). There is currently much discussion about CAPD, especially related to considering a child 
with this type of auditory concern and visual impairments as deafblind. We thought it might be helpful to share my 
response with SEE/HEAR readers. 

CENTRAL AUDITORY PROCESSING DISORDER (CAPD) 
CAPD Defined 

ASHA defined Central Auditory Processing Disorder in 1 996 as a disorder with problems in one of six areas: 

1 . sound localization and lateralization (knowing where in space a sound source is located), 

2. auditory discrimination (usually with reference to speech, but the ability to tell that one sound is different from 
another), 

3. auditory pattern recognition (musical rhythms are one example of an auditory pattern), 

4. temporal aspects of audition (auditory processing relies on making fine discriminations of timing changes in 
auditory input, especially differences in timing between the way input comes through one ear as opposed to 
the other), 

5. auditory performance decrements with competing acoustic signals (listening in noise), and 

6. auditory performance decrements with degraded acoustic signals (listening to sounds that are muffled, 
missing information or for some reason not clear. The best example I can think of is trying to listen to speech 
taking place on the other side of a wall. The wall 'filters' or blocks out certain parts of the speech, but a 
typical listener can often understand the conversation.). 

A person may have one or more of these problems for a variety of reasons. Originally, tests for CAPD were 
designed to be used with adults who had had a stroke or some other form of injury to the central nervous system. The 
tests were developed using speech, since the processing of speech uses skills covered in these six areas. Also, the tests 
were to be used with people who had already developed speech and language. When used with adults, these tests 
pointed to damage in the brain that could be confirmed by other means. 

Later these tests began to be used with children who seemed to have difficulties similar to an adult with CAPD. 
However, no specific brain damage was found in these children. Remember the days when we used the term "minimal 
brain damage?" Now we refer to these conditions as learning disability (LD). The theory about minimal brain damage 
was that there were neurological differences. However, these differences were too subtle to show up by the means 
used to directly examine the brain at that time. 

About this time a great debate started in speech-language pathology and audiology circles about CAPD in chil- 
dren. Does it exist? Is it a hearing loss if pure tone thresholds were normal? Was it different from a language disorder? 
What were the educational implications? There was research done. For example, some research indicated a link 
between chronic middle ear problems and CAPD, other research showed no connection. After following the debate 
for over twenty years, I can tell you that we are still asking the same questions with no more certainty about our 
answers. I don't know if the research is helping or hurting! 



26 



Auditory neuropathy one cause of CAPD 

So how does CAPD fit with auditory neuropathy? Well, it is my belief that CAPD is a term that refers to some type 
of problem in the auditory system which occurs neurologically above the level of the cochlea. These problems can 
occur for a variety of reasons. Differences in the auditory nerve (auditory neuropathy) might cause some of these 
problems. But there is more to the neurology of the auditory system than the auditory nerve. 

As the nerve fibers enter the brainstem at the base of the skull, they split and cross (similar to the optic nerve at the 
optic chiasm). Then the fibers go to various parts of the cortex of the brain. Most of the fibers go to the temporal lobe. 
However, current brain research is beginning to show that may be a model that is too simplistic. Differences in 
neurology, anywhere along the line, might result in the symptoms of CAPD. So, CAPD is a larger term. Auditory neuropathy 
may be only one cause of CAPD. This is mirroring our ideas about what we call neurological visual impairment (NVI). 

Auditory neuropathy defined 

Auditory neuropathy is a type of hearing impairment where the cochlea is working fine (or mostly fine), but the 
auditory nerve is not. We know so little about the ear and how it functions that we don't know why this occurs. These 
types of hearing losses can run the range from the person having no functional hearing at all to having fairly normal 
hearing. One of the theories behind hearing loss such as this is that the auditory nerve has not matured for some reason, 
such as prematurity, low birth weight, etc. Nature and time may effect a cure for this type of hearing loss. Sometimes 
good auditory stimulation may aide in this process, though there is currently no conclusive data. 

Historically, we probably have been serving many children as hearing impaired who have auditory neuropathy, but 
we did not have the technology to easily make the diagnosis. The fields of audiology and deaf education are divided 
about how to treat these children. One thing is for sure. We need to be very careful about using hearing aids with these 
children. They have normal cochleas that can be damaged by loud sounds, the same as anyone else with normal 
hearing. Amplification may only serve to blast those hair cells into oblivion. 

Are these children auditoriaily impaired? 

So, do we consider these children with CAPD or auditory neuropathy to be auditoriaily impaired? In Texas, for a g 
child to be identified as auditoriaily impaired, an audiologist needs to say that there is a "serious" hearing loss. No 
specification of cause (such as conductive or sensorineural) has to be made. Do I consider auditory neuropathy to be 
a type of auditory impairment? Yes! Does that mean that your audiologist and IEP team would consider your child q 
with auditory neuropathy to be auditoriaily impaired? Not necessarily. 



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There are some ways testing can be done that may help your team (including your audiologist) decide if your child 
should have the label of auditoriaily impaired. If the pure tone testing that was done indicates hearing is normal and the 
child is learning language but still delayed, it would be good to test word discrimination skills. Poor discrimination 
abilities may explain the language delays and support the existence of a "serious" auditory impairment. 

An audiologist could also look at discrimination skills in the presence of noise. The auditory neural pathways serve 
to help us localize and suppress noise. That way we can find what we need to pay attention to in the presence of noise. 
For a visually impaired child, these are critical skills. Think about how the student will be able to listen to the teacher 
in a noisy classroom or gym, or how he will be able to localize and pick out the sound of traffic to make a safe street 
crossing. Testing for discrimination skills in the presence of noise is another way to help your team determine how to proceed 

As an audiologist, if I find any malfunction of any part of the auditory system that cannot be fixed quickly (middle ear 
infection, wax in the ear canal, etc.), I consider that person to have an auditory difference. If that difference affects that 
person's ability to function, then I would consider the difference to be an impairment. Because of my knowledge as a 

27 



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teacher of the visually impaired, I have a broader idea of what the word "function" means to a visually impaired child. 
In determining whether a child is auditorially impaired , your team should consider the demano^placed on IhatcMd'shearing. 

IMPLICATION OF CAPD FOR THE VISUALLY IMPAIRED STUDENT 

What are the implications of CAPD for our students with visual impairments? Some students may be more at risk 
for CAPD. The reason for this is because the damage to their neurological systems which caused the visual impair- 
ments may also have caused damage to the auditory system. We certainly don't know what causes CAPD. Some- 
thing that caused the visual impairment could, in theory, have also caused CAPD. 

Would the loss of the ability to listen in noise have a different impact on a visually impaired student than a sighted 
student? Yes. Students with visual impairments often have to make greater use of spoken language than students with 
vision. Visually impaired students may be reliant on auditory reading, and have higher demands made on their auditory 
memory. They may be using "talking technology" such as a Braille N Speak or JAWS for their computer. Talk about 
a degraded acoustic signal ! If you have heard the voice quality of most talking technology you understand. Students 
with visual impairments also have need of good auditory skills for orientation purposes. Even though it is not good 
practice, we still persist in misusing auditory language to teach basic concepts in the absence of concrete experiences 
for these students. These are some examples of how we put greater demand on the auditory system of a person with 
visual impairments. 

Additionally, strategies related to teaching students with CAPD to compensate for their auditory impairment rely 
heavily on the use of vision. We counsel teachers of students with CAPD to write directions on the blackboard so that 
the student with CAPD can confirm what was heard by reading. Sighted students with CAPD learn to watch what 
their peers are doing if they miss a teacher's verbal directions. These strategies probably wouldn't work for a student 
with a visual impairment or blindness. 

DO CAPD AND VISUAL IMPAIRMENT EQUAL DEAFBLINDNESS? 

Given that a visually impaired student with CAPD faces some rather unique challenges, would I consider this 
student to be deafblind? The Federal definition of deafblindness says: 

Deafblindness means concomitant hearing and vision impairments, the combination of which causes such 
severe communication and other developmental and educational needs that they cannot be accommodated in 
special education programs solely for children with deafness or children with blindness. [34 CFR§300. 7] 

The question IEP teams should ask is this: Would a label of deafblindness get this student unique support he needs 
and would not otherwise get? 

Visually impaired students with speech and language 

So if I had a visually impaired student with speech and language who had poor performance on tests for CAPD, I 
might consider him to be deafblind. At the very least, I would want to think about it. I might also want to consider him 
a visually impaired student with a learning disability or a visually impaired student with a language impairment. 

Most teachers of students with auditory impairments will not have had much training or experience with students 
with CAPD. A speech-language pathologist or a teacher for the learning disabled might have more to offer this student 
than a professional in the deafness field. This is the point where the IEP process becomes so crucial and can work so 
well. Each student's educational situation is unique. I think we would do well to recognize that uniqueness when we 
identify disabilities and address educational programming. 



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Visually impaired students with cognitive impairments 

Students who have visual impairments and cognitive impairments such that spoken language is not being developed 
present a harder case for deciding if they should be considered deafblind. Certainly something in the brain is different. 
Is it limited to problems with using auditory information? Or is the deficit less specific and more global? Is the problem 
with auditory memory or all memory? Is the problem a more global language problem as opposed to a problem 
specific to spoken language? If we can't test hearing with the traditional tests that rely on spoken language ability, how 
do we test? 

Use a variety of methods to assess functioning 

There are some ways to look at information that may give us partial answers. The use of new audiological tests such 
as otoacoustic emissions audiometry (OAE) along with brainstem testing (BSER) might give us some clues. (This type 
of testing is used to identify some students with auditory neuropathy.) Changes of performance in noise and in quiet 
might offer insight. Looking specifically for the ability to locate and track a sound source might also offer some clues. Again, 
we must go back to the principle of treating each student uniquely. There is really no standard formula. 

I once tested a student with profound multiple disabilities who could demonstrate auditory skills only in the dark. If 
the room was lit, it was like the visual system grabbed all of the sensory processing ability and left nothing for the 
auditory system. I won't give myself any credit for being a totally fabulous audiologist! We stumbled on this purely by 
luck. With brain mapping becoming more available, we may have a new diagnostic tool with which to gain new insights 
into this condition. This new medical technology is still too new and uncommon, however, to be in regular use (at least 
in Texas). 



Improve the listening environment 

In the mean time, we need to be giving our students with profound impairments some support by providing good 
listening environments. This means, no radios or TV's constantly blaring in the classroom (or at home)! No class- 
rooms stuck next to the band room because "the noise bothers our regular students, but it doesn't really matter for 
these students." Consider avoiding portable classrooms which are often bad listening environments because the 
heaters/air conditioners are so loud. Recognize that gyms and cafeterias are horrible listening environments - too much 
echo. Basically we need to follow this rule: No bombardment with auditory input! All sensory input needs to be 
connected to meaningful activities. 

Make auditory input more meaningful 

The same things we do to make tactile and visual input meaningful we need to do with auditory input. Certainly, we 
could make our speech as simple and direct as possible, by using two- or three- word phrases instead of long sen- 
tences. Attach words that relate to what is happening to the student here and now. That way the words can be 
attached to something concrete. 



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CONCLUSION 

Whether the child is labeled deafblind or not, we have a responsibility to meet his or her educational needs. If there 
are legitimate issues with the way the child uses auditory information, we have to address that in programming. No 
doubt the debate about whether CAPD and auditory neuropathy are "true hearing impairments" will continue for some 
time to come. Perhaps new medical and assessment technologies will help us resolve that debate. In the mean time, 
we owe it to these children to make every effort possible to provide the supports they need to access learning. 



29 



09 



"You've Got Mail!" 

By Terry Murphy, Executive Director, Texas Commission for the Blind 

I can't believe I've already forgotten when the Texas Commission for the Blind initiated e-mails as a standard way 
of doing business. Three years ago - maybe four? I do remember, though, how excited we were. Our staffmembers 
who are blind could get information at the same speed as all other employees without the aid of readers; meetings could 
be set without multiple phone calls; and important messages from other parts of the country could arrive in minutes 
rather than days. We could even log on from home if we thought the office would fall apart without us. 

My enthusiasm for this 20th Century technological miracle and the doors it opens for people who are blind is still 
high, but I came face to face recently with a few of its shortcomings that have made me an occasional skittish and 
somewhat recalcitrant convert. Example: Yesterday I realized I'd spent a half hour composing a response to a 
message that could have been handled in five minutes over the phone. Last week I was further enlightened about the 
limitations of e-mail. It started when my computer told me I had mail from a familiar name - a former co-worker I 
hadn't talked to in years. Then another popped up from a friend. Both messages were full of concerns and questions 
about an e-mail I'd sent to a few people earlier in the week sharing a fact sheet prepared at Criss Cole Rehabilitation 
Center about our steps to take the agency's philosophy of Texas Confidence Builders to its next level. 

Because e-mails have become a habit, my first impulse was to write a response, but I quickly realized the impossi- 
bility of fully explaining in an e-mail message a philosophy that has been developing for three or four years. It would 
take days to type it. When a third message arrived, I picked up the phone. It was apparent that an old-fashioned face- 
to-face conversation was needed with a few key people. Since these were my colleagues and allies in the fight to 
reduce the incidence of unemployment among people who are blind and to increase their level of independence, 
continuing e-mails back and forth was definitely not the answer! 

The "next level" of Texas Confidence Builders raising my e-mail popularity was a fact sheet I'd shared with a few 
people about future classes at Criss Cole Rehabilitation Center. The announcement said that the Center's regular 
curriculum for all consumers choosing to receive services at the Center would in the future include basic blindness skills 
and confidence building activities using nonvisual techniques. Even though the fact sheet said that consumers who have 
remaining vision are provided a low vision evaluation, referred to the low vision clinic if appropriate, and provided with 
training in visual efficiency and use of low vision aids and devices once they have mastered the nonvisual techniques, 
there was a lot of concern about asking consumers with usable vision to take nonvisual training because it meant using 
a blindfold or not working with their guide dog in a particular class as they worked on skills. 

For those of you unfamiliar with our premier rehabilitation center in Austin, all consumers attending CCRC must 
meet the state's definition of blind: a person having not more than 20/200 visual acuity in the better eye with 
correcting lenses or visual acuity greater than 20/200 but with a limitation in the field of vision such that the 
widest diameter of the visual field subtends an angle no greater than 20 degrees. In simpler terms, blind can 
mean individuals who see nothing at all, individuals who can see light and shadows, and individuals with some limited 
vision. 

If you are a long-time reader of SEE/HEAR, you may remember my Spring 1 999 article, "Choosing to Carry a Full 
Golf Bag: An Informed Choice," in which I said that choosing the right iron for the distance in golf equates in rehabili- 
tation terms to choosing the right skill to do a particular job. The chances of a blind person achieving his or her best are 
greater with instruction, practice, experience, and a full set of skills from which to choose to travel, read, write, 
communicate and take care of personal needs. This is why, after years of study, we are convinced that if a person 
chooses CCRC training and completes their courses as we've redesigned them, there are fewer challenges ahead for 



30 



which that person has not been prepared, including those individuals with some vision. If a person can read 20 words 
a minute with optical aids, we feel that adding the skill of reading braille at 60 words a minute is a plus, not a minus. 
Which skill to use is up to the person and occasion. There is nothing from which to choose, however, if the person 
sticks to the narrower path. 

The course we are following in Texas Confidence Builders was not built overnight. The agency's top management 
team averages well over 20 years with TCB and in the field of blindness. Key managers have visited with every 
organization of and for the blind in Texas extensively over the last five years and regularly meet with national groups. 
We have been studying how to counteract the discouraging trend of individuals coming back into the rehabilitation 
system time and time again after finding themselves without the skills and confidence to thrive as a blind person in an 
increasingly competitive environment. We are also studying how to counteract the negative reaction to the word blind 
itself when blind basically means that your visual acuity is within a certain range and you use alternative ways of doing 
many things. There's no easy solution to either issue. 

The main thing about the Commission is that we are not afraid to tackle tough assignments. We are also not afraid 
to admit when something isn't working and try another way, because we are in a field that is worth the time and effort. 
We really believe what Congress says: Disability is a natural part of the human experience and the goals of the Nation 
properly include the goal of providing individuals with disabilities with the tools necessary to achieve equality of oppor- 
tunity, full inclusion and integration in society, employment, independent living, and economic and social self-sufficiency. 

I was asked recently what the agency's philosophy of Texas Confidence Builders means to the children served by 
our nationally recognized Blind and Visually Impaired Children's Program (BVICP) and Transition Program, and 
whether nonvisual skills will be the primary focus in these two programs. In actuality, our philosophy is much broader 
than this one issue. Both of these programs have been full participants these past two years in providing confidence- 
building activities for parents and children. We're committed to working as a team with parents and our educational 
colleagues to ensure children get the best possible education. In collaboration with our educational and local organiza- 
tional partners, a multitude of special projects were held. Many of you have participated in such events yourself - 
summer camps, family workshops, and similar activities. Additionally, our BVICP and Transition staffs work individu- 
ally with families to help them give their children lots of opportunities to develop healthy self-esteems and positive "can 
do" attitudes. 



Our primary job with children and their parents is to support the parents in their quest for knowledge and under- 
standing about their children's eye conditions and to provide supplemental services to the educational system and other 
state programs. The Commission plans to continue being a productive member of each child's team, advocating that 
the child who is blind gets the best possible education. As part of that, we will encourage parents and educators to fully 
use the child's functional vision evaluation and learning media assessment to determine if the child is learning a reading 
medium that will result in his being a proficient reader. Going back to my previous article, if a child can read print but 
fatigues easily or reads very slowly, or has a progressive eye condition that will eventually lead to him needing to know 
braille, we would encourage the team to consider teaching braille so that the child can maintain literacy. The same 
principles apply to other areas, such as travel and technology. 

What you will consistently hear from us is to explore all possible alternatives for your child, including nonvisual 
techniques. Talk to adults and groups of adults who are blind. Find out what worked and did not work for them. Get 
excited about the options and the future! 

As I'm writing this, a new year has begun. I wish each and every one of you SEE/HEAR readers a wonderful 200 1 . 
And by the way, I and my e-mail service are at peace once again. 



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Clarification Regarding the Choice of Braille 

as a Reading and Writing Medium 

By Dr. Phil Hatlen, Superintendent, Texas School for the Blind and Visually Impaired 

<PhilHatlen@tsbvi.edu> 

I recently had the privilege and pleasure to talk to a group of parents of blind and visually impaired children at a 
conference in Galveston. A popular topic among parents was how the choice is made between learning media. In 
other words, which children should be primarily braille readers and which should be primarily print readers? I had an 
opportunity to discuss this topic on Saturday afternoon. Unfortunately, I think that some of my comments were not 
clear, and that some parents left the meeting with impressions of my position on learning media that are not complete or 
correct. Therefore, I am writing this article, hoping that parents who may have misunderstood me will have a better 
understanding of my beliefs about teaching print and/or braille. 

Most blind or visually impaired children fall into four categories when it comes to learning media. Some will 
certainly be print readers, for their vision allows them to read quickly and accurately, using either regular print, large 
print, or optical devices. Reading is not hard work for them, and they will achieve speed and comprehension rates that 
are sufficient for both educational and recreational reading. 



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Other students will obviously be braille readers and writers. Often these children will be either totally blind or have 
light perception only. Contrary to myths that have existed around braille for many years, this literacy medium is not too 
bulky, too slow, or too hard to find. Braille is, in fact, an excellent medium for reading and writing, and is not a second- 
class system to print. 

A third group of learners will have difficulty with both print and braille. These students often have educational 
challenges in addition to a visual impairment. They will explore other means of literacy. One will be auditory learning. 
Another might be tactile symbols and calendar boxes. For all children who are blind or visually impaired, there will be 
a means by which literacy can be achieved in some form. That is what education is all about. 

The fourth group is the one about which there is some misunderstanding and often confusion. This is comprised of 
children who are visually impaired and have enough vision to perform some tasks and activities visually. Some parents 
and professionals will want these children to learn braille. Others will advocate for full use of remaining vision, including 
the tasks of reading and writing. 

The confusion about this fourth group happens when we fail to consider braille and print as being equal methods for 
reading and writing. If we believe one is superior over the other, we are at risk for making serious educational mistakes 
with children. Texas has recognized this problem, and legislation has attempted to place braille and print on a "level 
playing field" by requiring completion of a Learning Media Assessment on these children. The results of this assess- 
ment should serve as an excellent guide for the educational decisions that parents and teachers need to make. 

What sometimes complicates the decision to be made, based on a learning media assessment, is that children who 
will learn print can easily be provided their reading program in a general education classroom. Children for whom 
braille is indicated will need to be taught by a credentialed teacher of the visually impaired. General education class- 
room teachers are not qualified to teach braille reading and writing, nor are paraprofessionals. For the child who will 
learn braille, the teacher of the visually impaired must be at his/her school every day. Recent data indicates that, for a 
child to be successful in learning braille, the teacher of the visually impaired must be available to offer instruction in 
reading for at least one hour per day. 



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Because of the shortage of teachers of the visually impaired in Texas as well as throughout the country, it is some- 
times difficult, if not impossible, for the teacher to be with the braille learner for an hour a day. If the teacher of the 
visually impaired's caseload is too large, or geographic area of responsibility too big, then he/she may not be available 
to the child as often as needed. This is a very, very serious problem in providing the correct and most useful literacy 
skills to this group of students. Sometimes, in cases where there seems no other solution, the teacher of the visually 
impaired may consent to a child learning print even though braille would be preferred. 

What I said in Galveston is that, if your child has pencil smudges on his nose when he finishes writing or if your child 
is reading one-inch high letters on a CCTV at less than 20 words per minute, I suspect he/she is in the wrong reading 
medium. If your child cannot read a whole word at a single glance, then your child may not be in the best reading 
medium for him/her. There are other tests to determine the correct reading medium, but the one that will satisfy both 
parents and teachers is the Learning Media Assessment, and it is required by Education Code to be administered to all 
blind and visually impaired students in Texas. 

Parents, if you have not seen the results of your child's Learning Media Assessment, then I suggest you ask to see 
it. If you believe that your child would be better served with a different reading medium, then I suggest you discuss this 
with your child's teacher of the visually impaired. If your child is not receiving instruction in reading and writing as often 
or for as long as you agreed to at the child's ARE) meeting, then discuss this with your teacher of the visually impaired. 

Blind and visually impaired students are fortunate to have a variety of means by which to achieve literacy. If 
teachers and parents use these choices well, then every child in Texas should develop literacy skills to the maximum 
extent, and in the best medium, possible. It is up to parents to know what their children need, to work together with the 
schools to assure that there is agreement regarding the educational services provided, and to work with their teacher of 
the visually impaired so that children are assured of the best education possible. 

Follow the Braille Trail 

Reprinted with permission from the American Foundation for the Blind 

Braille is endlessly fascinating for elementary school children who read print, especially for those who have a 
classmate who reads braille. The Braille Trail is the new packet from the American Foundation for the Blind to 
celebrate Braille Literacy Month, which was January 200 1 . The text was written by Anna Swensen, author of the 
popular book, Beginning with Braille (AFB Press, 1 998), and was designed specifically for sighted elementary 
school children who want to learn about braille reading, writing, and math. The materials are introduced by Kyle 
Belanger, a student in New Hampshire who is an avid braille reader. He invites readers to learn more about this "secret 
code" of braille! The Braille Trail includes background information about the code, including basic explanations 
about braille contractions and the Nemeth code, and photographs of common types of braille technology devices. 
Activities in simulated braille such as scrambled words, matching columns, and riddles are included for added fun. 
Lists of kid-appropriate websites, and picture and chapter books are included to give children additional opportunities 
to read more about braille and people who are blind. In addition, a copy of the special edition Weekly Reader 
produced by the American Printing House for the Blind is included. There's even a "secret message" written in 
uncontracted, embossed braille ! The entire packet is colorfully and cleverly designed to capture a child's interest and 
imagination. Packets are free of charge. Due to anticipated demand, only one copy will be sent per request. ^ 

Since the materials were designed for sighted elementary school children and have a high graphic content, the 
packet is available in print only. However, because we want blind children and teachers to also share these materials 
with others, we will make available, upon request, the text content of the materials in braille with a description of the 
graphics on each page. To request The Braille Trail, contact the American Foundation for the Blind National Literacy ^ 
Center, 100 Peachtree St., Suite 620, Atlanta, GA 30303; phone: (404) 525-2303; toll-free: (800) 232-5463; e- (/) 
mail: <literacy@afb.net>. 33 






What I Learned Last Summer 

By Jim Durkel, Statewide Staff Development Coordinator, TSBVI, Outreach 

Last summer, Texas School for the Blind and Visually Impaired sponsored a technology institute. As part of that 
training, we had a keynote speaker by the name of Guido Corona. Guido is an employee of IBM. One of his current 
projects is developing software that will make surfing the Internet easier for people with sensory and motor impair- 
ments. Guido has retinitis pigmentosa and has been losing visual abilities since he was a young child. 

During his talk, Guido mentioned that technology serves three main functions that in his life: 

• First, he uses technology to stay organized - notetakers, personal microcassette recorders, that type of 
technology. 

• Second, he uses technology to access his computer and the Internet. 

• Finally, he uses technology to handle printed materials - bills, letters, information along those lines. 

Getting this insight from Guido has helped me start thinking about the types of technology that students with visual 
impairments may need. It's also helped to think about desired outcomes and broad classes of technology, instead of 
specific devices or software. My tendency was to get into ruts and become familiar with one device that I then thought 
everyone should use. I would get frustrated when that piece of technology did not work for a particular student. 
Focusing on what I want the technology to do, then looking at all my technology options, sure seems like a better plan. 
Thanks for the insight, Guido ! 



ft 

w 

z 



New Guidelines Available to Provide Guidance on 
Making Software Accessible to Deaf or Blind Users 

Reprinted with permission from the CPB/WGBH National Center for Accessible Media 

Educational software publishers interested in making electronic textbooks and other instructional materials useful 
to as many students as possible will be aided by a new publication from the CPB/WGBH National Center for Acces- 
sible Media (NCAM). "Making Educational Software Accessible: Design Guidelines Including Math and Science 
Solutions" is the result of a three-year, National Science Foundation-funded effort by NCAM which offers a wealth of 
information for educational designers and developers. Charles E. Mayo, Assistant Director of Textbook Administra- 
tion with the Texas Education Agency stated, "This document is a truly invaluable resource which the Texas Education 
Agency will recommend to publishers as they plan development of new multimedia textbooks. This publication fills an 
immense gap in the body of technical information needed by publishers to produce accessible electronic textbooks for 
all students." The guidelines are also expected to aid efforts by publishers of Web-based media seeking to comply with 
existing and pending accessibility regulations on Federal and state levels. 

In this document, readers will find: 

• a review of current policies requiring the use of accessible educational software; 

• a basic understanding of the needs of users with different disabilities; 

• a summary of various approaches to serve users with different disabilities; 

• specific solutions for designing more accessible software; 

• guidelines with specific checkpoints and detailed techniques for implementation. 



34 



Technical information covers common development environments and includes references to more detailed ac- 
cessibility guidelines. In addition, specific guidelines on educational materials are included. Here's what another expert 
in the field had to say about the new guidelines: 

"Adherence to these guidelines by curriculum developers and publishers will make multimedia instructional mate- 
rials in science and mathematics better for all students, while ensuring that those with disabilities will enjoy a greatly 
improved learning environment." (Lawrence A. Scadden, Ph.D., Senior Program Director, Program for Persons with 
Disabilities, National Science Foundation) 

"Making Educational Software Accessible: Design Guidelines Including Math and Science Solutions" is available 
free of charge in print and on the World Wide Web. Request print copies (bulk orders accepted) through Mary Watkins at 
(6 1 7) 300-3700; e-mail: <Mary_Watldns@wgbh.org> or read the guidelines online at: <ncam. wgbh.org/cdrom>. 

FCC Expands Described Video 

From Telebility Media, Vol. 9, No. 3, October 2000 

Described video on television for blind and visually impaired consumers will significantly expand by April- July 2002 
with approval of a new Order and Report by the Federal Communications Commission on July 2 1 . Broadcasters 
affiliated with the ABC, CBS, Fox, and NBC networks in the top 25 markets would be required to provide a minimum 
of 50 hours per calendar quarter, roughly four hours a week, of description in prime time and/or children's programming. 

Cable systems and satellite program providers, with more than 50,000 subscribers, will be required to provide 
video description for the same amount and type of programming on each of any of the top five national, non-broadcast 
networks they carry. Any broadcaster or cable system must "pass through" the video description from a provider, if it 
has the technical equipment necessary to do so. 

Video description is transmitted to the audience through the Secondary Audio Programming (SAP) channel. Ex- 
perience will guide the Commission, the industry, and the public on whether and when to expand the new service in the future. 

The new rules apply only to analog transmissions. The Commission said it wanted to bring video description to 
digital transmissions, but it would not do so until more experience was had with both. 

The Commission said there were nearly 1 2 million persons with a visual difficulty that cannot be corrected with 
ordinary glasses or contact lenses, and noted that 9 to 14 per cent of the population 75 years or older has vision 
difficulties. The new service could also benefit nearly 1 .5 million children with learning disabilities by capturing their 
attention and enhancing their information processing skills. 

Jim Stovall, president of the Narrative Television Network (NTN), said, "As a blind person myself, and as head of 
a corporation that, for over a decade, has been a leader in accessible television for blind and visually impaired people, 2| 
this may well be the most significant day in the lives of your nation's 1 3 million visually impaired people and their families." P] 

He added, "Narrated programming has opened a whole new world for blind and visually impaired people and their \fx 
families. The FCC 's action will make it a standard throughout the industry and will begin to include the visually jV 
impaired in all of the information, educational, and entertainment opportunities that television can provide." , 

Dr. Margaret Pfanstiehl, one of the nation's leading pioneers in the field of audio description, said, "This is going to f^ 
mean so much to people across the nation who are not adequately enjoying television because they can't really see the ^j 
screen." She also praised FCC Chairman William Kennard for his "courageous leadership" in supporting the rules. ^ 

35 L_ 



Larry Goldberg, director of the Media Access Group at WGBH-TV, commented, " WGBH's Descriptive Video 
Service, DVS, is celebrating its tenth anniversary this year. While we welcome the support of Public Broadcasting and 
Turner Classic Movie Channel, it really is time for other major information and entertainment providers to join in on this 
vital and wonderful service for our nation's blind and visually impaired citizens." DVS is a WGBH trademark. 



CO 



New Web Features Will Help Employers Hire Workers with Disabilities and 
Help the Media Do a Better Job of Reporting on Disability Issues 

From the Presidential Task Force on Employment of Adults with Disabilities 

WASHINGTON - November 15, 2000 - New features have been added to a government Website to help 
employers do a better job employing workers with disabilities and to help journalists do a better job reporting on issues 
that affect those with disabilities. The new Employers' Resource section and Media Resource section have been 
added to <www.disAbility.gov>. 

"At a time when our nation is experiencing record levels of employment, the unemployment rate is unacceptably 
high for individuals with disabilities," Secretary of Labor Alexis M. Herman said. "This web portal is another tool to 
support employers and job seekers in the effort to increase the employment rate." 

Secretary Herman chairs the Presidential Task Force on Employment of Adults with Disabilities, which was estab- 
lished in 1 998 to create a coordinated and aggressive strategy to increase the employment of people with disabilities to 
a rate as close as possible to that of the general population. 

The Website, announced by President Clinton on the Tenth Anniversary of the Americans with Disabilities Act in 
July, offers a vast array of resources for individuals with disabilities, including information about health, housing, educa- 
tion, transportation, recreation and employment. The new Employers' Resource section provides business access to 
information that facilitates recruiting, hiring and making easy, low-cost accommodations for employees with disabilities. 
The new Media Resource section will offer journalists and broadcasters information on appropriate language for 
reporting about people with disabilities, interviewing tips, and a growing bibliography of publications and films that 
depict the disability experience. 

Already, disAbility.gov has been accessed by more than 160,000 people and has won acclaim from other 
Websites. <CBS.com> has listed <disAbility.gov> as one of the 1 00 most useful web services in America. A recent 
study by the Harris Research Group indicates that adults with disabilities spend twice as much time on the Internet as 
individuals without disabilities. The survey also found that adults with disabilities are much more likely to report that the 
Internet has significantly improved the quality of their lives. 

Despite today's robust economy, citizens with disabilities are continually under-represented in the nation's work 
force. Only three of every ten people with disabilities are working full or part time; eight of every ten who are not 
disabled are actively employed. 

The task force chaired by Secretary Herman is currently collaborating with leading Internet dot-com employment 
businesses such as <Monster.com>, <BrassRing.com> and <Webhire.com> to integrate disability related employ- 
ment support tools into their services. Addition of these tools will not only assist the dot-coms' employer customers in 
recruiting and hiring people with disabilities, but will also provide job candidates with pre-employment tools such as 
resume writers and links to federal government job search services. 

"We are pleased that some of America's most successful online employment companies have made it a priority to 

36 



help employers benefit from the contributions that employees with disabilities can bring to business," said Becky Ogle, 
executive director of the task force. "We hope others will join us in our effort." 

"<Monster.com> is excited to be a part of this comprehensive web portal for individuals with disabilities. We are 
committed to providing the services and tools that enhance career potential for all job seekers," said JeffTaylor, CEO 
of <Monster.com>. "Working with the Presidential Task Force on Employment of Adults with Disabilities allows 
<Monster.com> to further strengthen its mission of empowering people who want more out of their career and their life." 

"We are extremely pleased to be able to participate in this worthy endeavor. The technology industry has proven 
itself to be an area where people with disabilities can truly excel," said James Sale, Executive Vice President of 
<BrassRing.com>. 

The Presidential Task Force on Employment of Adults with Disabilities was established by Executive Order of 
President Clinton in March of 1 998. The Task Force consists of the heads of eighteen government agencies. Tony 
Coelho serves as vice chair. Information about the task force also is available as <www.disAbility.gov>. 



Proposed Changes for Students in Private and Home Schools 

By Jean Robinson, Family Support Specialist, TSBVI, VI Outreach 

Proposed changes are in sight for students enrolled in private (including home) schools. Before these proposed 
changes, parents in Texas, had been allowed to request and receive special education services if their child was home 
schooled or enrolled in a private school. Services were provided under the "dual enrollment" rule. (See Chapter 
89. 1 095 <http://www.tea.state.tx.us/special.ed/rules/>.) Section 89. 1 095 required school districts to serve students 
with disabilities placed in private schools by their parents if they were dually enrolled in the school district and private 
school. Amended federal law limits the service that schools and states are obligated to provide to students placed in 
private schools by their parents. With these changes, Texas proposes to fall in line with the federal regulations and 
reduce services offered under "dual enrollment." The proposed rule can be found in Chapter 89.1096 (<http:// 
www.tea.state.tx.us/special.ed/rules/proprule.html>) and is expected to go into effect the summer of 2001 . Special 
education services that have been provided in the past to students under "dual enrollment" will change. Dual enrollment 
will exist only for children between three and five years of age. Parents need to consider this change when deciding 
whether to enroll their child in a private school, home school, or public school. Check out the Texas Education Agency 
special education website, <wwwtea.state.tx.us/special.ed>, for more information. Your public librarian can help you 
access this information. 

Kate's Corner - continued from page 1 

Another change that has taken place is shifting the responsibility for presenting the "Through Your Child's Eyes" 
workshop from Outreach staff to TCB, ESC, and others in the regional and local setting. This change began with a 
one-day workshop which took place at TSBVI in December using a train-the-trainers model . Approximately half of 
the regional education service center areas were represented by staff from the ESCs, TCB, and in one region, from the 
ECI program. Jean and I were delighted with the response to this change and feel good about turning "our baby" over 
to such dedicated and competent presenters. Although many of the participants have not been presenters at this 
workshop in the past, many of them have served as hosts for this workshop in their regions. 

With a little more time on our hands, since "Through Your Child's Eyes" will be handled regionally, Jean and I are 
working on developing two new workshops that we hope to begin taking out on the road later in 200 1 or early in 2002. 
One of these workshops will be targeting parents of children with deafblindness and focus on the tactile sense. The 
other of these workshops will be on IDEA and vision specific SBOE rules. More information about these workshops 
will be shared in future editions of SEE/HEAR. 

37 



g 

8 

n 

00 



CLASSIFIED 






Mail or e-mail your new classifieds to Jim Durkel at: 

TSBVI Outreach, 1 100 West 45th St., Austin, TX 78756, or JimDurkel@tsbvi.edu. 

An up-to-date Statewide Staff Development Calendar is posted on TSBVFs website at <www.tsbvi.edu>. 



INSITE: 

A Home-Based Model 

for Infants, Toddlers & Preschoolers 

Who Are Sensory Impaired 

with Other Disabilities 

This six-day training is for professionals who work 
with these children and their families. If you are 
interested in attending this training or bringing this 
training to your area, call Gigi Newton at (5 1 2) 206- 
9272, or e-mail her at GigiNewton@tsbvi.edu. 



Mt. Pleasant, Texas 

Parti- June 4-6, 2001 
Part II -June 27-29, 2001 
Contact: Donna Clopton 
(903)572-8551 



Austin, Texas 

May 14-19,2001 
Contact: Gigi Newton 
(512)206-9272 



Cognitive/Communication 

Assessment and Interventions 

for Children with Multiple Disabilities 

April 9-1 1,2001 

College Station Conference Center, Room 1 27 

1 300 George Bush Drive 

College Station, Texas 77840 

Presenters: Charity Rowland & Philip Schweigert 

Everything you've ever wanted to know about deafblind stu- 
dents, students with multiple impairments, and students with 
visual impairments emphasizing: assessment instruments, 
problem solving and object interaction, analyzing the commu- 
nication environment, analyzing presymbolic communication, 
analyzing tangible symbols. 

Audience: Speech Pathologists, Educational Diagnosticians, 
General and Speech Education Teachers, and Parents 

Contact: Nodya Thornton at (936) 293-3787 

E-mail: <thornton@esc6.net> 

Website: <www.esc6.net> 



Josephine L. Taylor Leadership Institute 2001 

Leadership, Data, and Partnerships 
to Level the Playing Field 

March 16-18, 2001 

Washington Marriott Hotel 
Washington, DC 

Carl Kupfer, M.D., recently retired Director of 
the National Eye Institute, will be keynote 
speaker for this year's event. Friday's plenary 
session, "Bringing Services to People" brings 
together experts from the fields of ophthalmol- 
ogy, optometry, and vision rehabilitation special- 
ties. They will address future directions and 
strategies for leveling the playing field for people 
who are blind or visually impaired by focusing 
on leadership, data, and partnerships. Saturday's 
first panel is entitled, "Bringing People to Ser- 
vices." Experts will address some of the barri- 
ers that potential consumers face such as geo- 
graphic and ethnic cultural factors. Saturday's 
second panel is entitled, "Go Figure! You Have 
the Data You Need." Experts will focus on 
how to meet your data needs for planning, ad- 
ministering, and evaluating services. 

Registration fees (major meals included): 

"Early Bird" registration - $245 

(2/16 postmark deadline) 

"Pre-registration" - $295 

(3/8 postmark deadline) 

"At-the-Door" - $325 

For more information on JLTLI 2001, 

contact the events coordinator, 

Gabriella Smith-Coventry 

Phone: (212)502-7654 

E-Mail: <gsmith@afb.net> 

Website: <www.afb.org/event> 

On Sunday afternoon following JLTLI 
there will be a special training for parents 
on IDEA provided by NAPVI. 



38 



Deafblind Mailing List in Spanish 

This list is entirely in Spanish and is for Deafblind 

people, families, volunteers, professionals, 

investigators and educators. 

To subscribe to this list, send an email to 
< listserv@listserv.rediris.es> 

In the body of the e-mail, write: 

SUBSCRIBE sordoceguera first name last name 

For assistance, contact the owner at 
sordoceguera-request@listserv.rediris.es 



TAER 

(Texas Association for the 

Education and Rehabilitation 

of the Blind and Visually Impaired) 

"Partners in C.R.I.M.E." 

(Partners in Collaborating Resources 

Into the Millennium for Everyone) 

Corpus Christi, Texas 
The Omni Bayfront Hotel 

April 19, 20 and 2 1,2001 

This year's conference will feature Maria Runyan as 
one of our guest speakers. Maria is a top-ranked 
middle distance runner who participated in the 2000 
Olympics. She has been legally blind since she was 
nine years old. Read more information about Maria 
on her web page, <www.marlarunyan.com>. 

We are also excited that Jeff Moyer - author, 
songwriter, entertainer, and disability rights activist has 
agreed to do several presentations for our confer- 
ence. Jeff is visually impaired, and his messages and 
music focus on the acceptance of differences. To 
find out more about this fascinating man, visit his web 
page, <www.jeffmoyer.com>. 

Contact: Pamela Broadston (806) 742-2345 



Annual Early Childhood 
Intervention (ECI) Conference 

Renaissance Hotel, Austin, Texas 

April 30-May 2, 2001 

This conference is for professionals and parents 

involved with children ages birth to 3 

who have disabilities. 

Contact: The Care Line (800) 250-2246 



Texas Focus: 
Looking at Low Vision 

Dallas/Ft. Worth Area 

June 14-15,2001 

Texas Focus is an annual conference designed for 
teachers of students with visual impairments, orienta- 
tion and mobility specialists, and parents. This year 
topics will center around issues concerning students 
with low vision, including the use of optical aids, in- 
creasing visual efficency, and literacy. 

Contact: JimDurkel 
Phone: (512)206-9270 
E-mail: JimDurkel@tsbvi.edu 



TSBVI Technology Institute 

Austin, Texas 

September 21 & 22, 2001 

The Technology Institute is designed to train teachers 
of students with visual impairments how to use various 
pieces of technology for the visually impaired. Topics 
include Braille N Speak, JAWS software, software to 
assist in Internet access as well as Megadots and 
Duxbury for braille production. 

Contacts: 

JimDurkel (5 12) 206-9270, 

E-mail: JimDurkel@tsbvi.edu; 

Sharon Nichols (512) 206-9388, 

E-mail: SharonNichols@tsbvi.edu 



39 



SEE/HEAR 

published quarterly: February, May, August, and November 

Available in Spanish and English on TSBVI's website at <www.tsbvi.edu>. 

Contributions to the newsletter can be mailed or e-mailed to section editors at: 

TSBVI Outreach 
1100 West 45th St. 
Austin, TX 78756 



Deadlines for articles are: 

December 1 st for the Winter edition 
March 1 st for the Spring edition 
June 1 st for the Summer edition 
September 1 st for the Fall edition 

Production Staff 

Editor-in-Chief- Kate Moss (512) 206-9224; 

KateMoss@tsbvi.edu 

Layout Editor - Craig Axelrod (512) 206-9435; 

CraigAxelrod@tsbvi.edu 

TCB Editor - Edgenie Bellah (5 1 2) 377-0578; 

edgenie.bellah@tcb.state.tx.us 

Website Editor - Jim Allan (5 1 2) 206-93 1 5 ; 

JimAllan@tsbvi.edu 

Production Assistant - Jeannie LaCrosse-Mojica 

(5 1 2) 206-9268; JeannieLaCrosse@tsbvi.edu 



Section Editors 

Family -Jean Robinson (512) 206-9418; 

JeanRobinson@tsbvi.edu 

Programming - Ann Rash (5 1 2) 206-9269; 

AnnRash@tsbvi.edu 

and Gigi Newton (512) 206-9272; 

GigiNewton@tsbvi.edu 

Syndromes/Conditions - Kate Moss (512) 206-9224; 

KateMoss@tsbvi.edu 

News & Views - Edgenie Bellah (5 1 2) 377-0578; 

edgenie.bellah@tcb.state.tx.us 

Classified- Jim Durkel (512) 206-9270; 

JimDurkel@tsbvi.edu 

The audio version of SEE/HEAR is provided by 

Recording for the Blind and Dyslexic, Austin, TX. 

If you no longer wish to receive this newsletter, 

please call Beth Rees at (512) 206-9103 or 

e-mail her at BethRees@tsbvi.edu. 



This project is supported by the U.S. Department of Education, Office of Special Education Programs (OSEP). Opinions expressed 
IDEAs-* herein are those of the authors and do not necessarily represent the position of the U.S. Department of Education. 

%Work 

ffi«Jsp«ai The Outreach Programs are funded in part by IDEA-B Formula, and 1DEA-D Deaf-Blind Federal grants. 

oPropam. Federal funds are administered through the Texas Education Agency, Division of Special Education, to the Texas School for the Blind 

and Visually Impaired. Texas School for the Blind and Visually Impaired does not discriminate on the basis of race, color, national 

origin, sex, religion, age or disability in employment or the provision of services. 



Texas School for the Blind and Visually Impaired 
Outreach Program 
1100 West 45th St. 
Austin, Texas 78756 



NON-PROFIT ORG. 
U.S. POSTAGE PAID 
AUSTIN, TEXAS 
PERMITN0.467 



Cathy Johnson 
Kentucky School for the Blind 
1 867 Frankfort Avenue 
Louisville, KY 40206 



SEE/HEAR 



A QUARTERLY NEWSLETTER ABOUT VISUAL IMPAIRMENTS AND DEAFBLINDNESS FOR FAMILIES AND PROFESSIONALS 
A collaborative effort of the Texas School for the Blind and Visually Impaired and Texas Commission for the Blind 

Spring 2001 Volume 6, No. 2 



Table of Contents 

FAMILY 

Absorbing the Sights 2 

Special Education Serves Diverse Students 3 

Baby Talk 5 

Blindness Isn't an Obstacle 6 

Just a Typical Teenager. 9 

PROGRAMMING 

A Celebration of Communities and Connections: The 2001 Texas Symposium onDeafblindness 9 

Trends in the Use of Braille Contractions in the United States - Implications for UBC Decisions 1 2 

A Time to Embrace - Parents of Special-Needs Children Find Respite in Night-Out Programs 17 

I'm an Outreach Consultant - Do I Really Want to Do Raised-Lined Drawings? 19 

SYNDROMES/CONDITIONS 

Leber's Congenital Amaurosis 22 

Meningitis 23 

Attention: Individuals and Families with Usher Syndrome 25 

Interesting Facts from the Year 2001 Annual Registration of Students with Visual Impairments 26 

The 2001 Texas Deafblind Census 27 

NEWS & VIEWS 

Look the World Straight in the Eye 30 

A Vision for Texas -Our Profession Determines Its Own Destiny 31 

Book Review: What's Stopping You? Living Successfully with Disability, 34 

Spanish-Language Low Vision Booklet Now Available! 35 

Are You Still Looking for Summer Activities for Your Kids?? It MAY Not Be Too Late! 35 

Short Classes at TSB VI 36 

Finding Wheels Listserv. 37 

Survey Regarding Proposed Changes to the APH Tactile Graphics Kit 37 

Classified 38 



Kate's Corner 

One of the best things about working in the field of visual impairments and deafblindness is the wonderful people 
who become your friends through the years. At the Texas Symposium on Deafblindness which took place in February 
in Dallas, many of my friends, new and old, came together to learn and to honor some special people we know. 
Beginning on page 9 you can learn more about this celebration and some special awards that were presented there. 

Another event, the Texas AER Conference, took place in April, and a number of our friends were honored there. 
Join us in congratulating all these deserving folks and celebrating their achievements. 

Kate's Corner - continued on page 25 



2 
s 



Editor 's note: In this edition of SEE/HEAR we wanted to feature a number of individuals with visual 
impairments and deafblindness who are doing a variety of interesting things with their lives. As you read about 
each of them, we think you will be reminded that life is about more than a disability. 

Absorbing the Sights 

By Amanda Rogers, Staff Writer, Arlington Star-Telegram 

<arogers@star-telegram.com> 

Reprinted courtesy of the Arlington Star-Telegram 

Daynon Welch, 1 0, plows through the barns at the Stock Show, dodging poop and people with skill and trying to 
see everything at once. Not so easy when your sight extends only six feet. 

"What's in there?" Daynon asks as he darts ahead of vision teacher Joanne Kennedy's group. Daynon heads inside 
a barn he can barely see. 

"That would hurt if it fell on you," he says as he leans closer to a Brown Swiss cow lying in the straw. "Can I touch 
it?" The Granbury fourth-grader sits down next to the cow to rub her side. Soon he has petted every cow in the area. 

Daynon and 53 other youngsters got their chance Friday to "see" the Stock Show and Rodeo courtesy of the 
Telephone Pioneers, a service organization at Southwestern Bell of Ft. Worth for decades. The Pioneers picked up the 
$ 1 ,200 tab for 75 rodeo tickets for the students, teachers and chaperones. 

The Pioneers take the children to the Stock Show and the circus every year, said Delane Archer, one of the 
organizers. 

None of the children focuses on what they can't do, only what they can, Archer said. They visit the FFA Children's 
Barnyard, cruise through the barn, then head to the rodeo. 

To help the children "see" the rodeo, Southwestern Bell supplies 37 headphones connected to a microphone that 
Paula Reed-Toilet uses to describe what's going on in the arena. 

Rodeos are nothing new for 1 0-year-old Brittney Holland, who has been legally blind since birth. Brittney, a fifth- 
grader from Aledo, started riding horses when she was 4 and won her first belt buckle for barrel racing from Profes- 
sional Youth Rodeo Association at age 9. 

What's so nice about this is they have headphones," said her mom, Susan Holland. "Even though we go to rodeos 
twice a month, this helps Brittney know what's going on." 

Brittney has no vision in one eye and has 20/400 sight in the other. To help her navigate the course, her barrel- 
racing sister, Hay ley, 1 2, and her mom talk to her on walkie-talkies to tell her when to turn and when to slow her horse, 
Red. There are also people at each barrel telling Brittney when to turn. 

After checking out the animals in the barns, Daynon and Brittney are eager to pull on the headphones to hear Reed- 
Tollet describe the opening ceremonies at the rodeo in the Will Rogers Coliseum. Both use hand-held telescopes. 

"They're riding a fabulous array of horses and some of them are going to do scary tricks," Reed-Toilet says 
excitedly into the microphone. When a bucking horse bursts out of the chute, she tries to explain why the horse is trying 
so hard to toss its rider. 






"We wear a belt to hold up our pants," she says. "The horses wear a belt, but they don't care much for it. These 
are wild horses and they buck." 

Reed-Toilet started doing the running commentary for Southwestern Bell 25 years ago when she worked on a 
children's TV show, Kid's Korner, on Channel 1 1 . 

"I just try to describe all the colors and what people are doing," she says as fireworks explode inside the arena. 
"Ohh, fireworks! That sound you heard was fireworks going off. Don't be afraid. They're going off inside the 
building." 



t 



5 



Special Education Serves Diverse Students 

By Tommy Young, Staff Writer with the Plainview Daily Herald 
Reprint courtesy of the Plainview Daily Herald 

Many people think of mentally disabled children when they think about special education programs. But director 
John Hightower says the Plainview ISD Special Education program has evolved into an all-encompassing project. 

"We serve students with all manner of both physical and mental special needs. We strive to give all of our students, 
disabled or not, a fair shot at having equal access to a free public education." 

The district serves 855 students with special needs and a number of the students have physical disabilities. The 
district has a wide array of programs to help students who need more than traditional instruction. 

"We rely on a lot of technology to help our students compete on a level playing field," said Hightower. "We also 
employ several individuals with specific training who incorporate the technology to assist our students." 

The district has one physical therapist, two occupational therapists, a school psychologist, a speech therapist, and 
several teaching assistants who give the students individual attention. 

One Plainview student who receives a great deal of assistance from the various technologies and individuals in- 
volved in the ISD Special Education Program is Jeffrey Pruett. 

He is a 1 6-year-old freshman at Plainview High. He has been diagnosed with Friedreich's Ataxia, one of the 40- 
plus types of Muscular Dystrophy. 

"It is a neurological disease that attacks the muscles, but Jeffrey has been hit pretty hard," explains his mother, 
Jeanie Pruett. "It doesn't normally attack as early in life as it did Jeffrey. It also has affected his vision - he is legally 
blind - and his hearing. He is deaf, and it doesn't normally do that." 

Jeffrey is confined to a wheelchair and has lost the ability to swallow, necessitating his use of a feeding tube. But 
Jeffrey's mind is sharp and vibrant. 

As his father Brian put it: "His body is confined to that wheelchair but his mind is free, and he makes the most of that 
freedom." 



"Jeffrey has the same hopes and dreams as any other 1 6-year-old. He wants to have a girl friend and go to college 
and be a productive part of society," says his mother. 



3 



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Jeffrey also has the Special Education program at Plainview High helping him be as fiee as possible and attaining his goals. 

"I think the school district and Mr. Hightower absolutely do the best they can to provide Jeffrey and all of their 
disabled students the best education they can," said Mrs. Pruett. "They try and get him the kind of equipment he needs, 
and they've even gone as far as to rearrange the bus schedule where he is the last one on the route so he doesn't 
become fatigued due to his bus ride. They've even customized his class schedule where they allow him to take two 
blocks of art class." 

Jeffrey displays an extraordinary talent as an artist that belies his physical limitations - enough talent that he is 
entering an art contest for disabled students sponsored by the Helen Keller Foundation. 



Art teacher Sandy Smith feels Jeffrey 's talent inspires able-bodied students around him. 

"Seeing the amount of talent he has and what he can achieve amazes them. He has a remarkable ability to transfer 
what he sees to paper or canvas. He is full of life and he brings that quality to his art work. I believe it inspires other 
students to go beyond what they expect of themselves," said Mrs. Smith. 

"He wants to be part of what's going on and in art class he is able to do just that," added Mrs. Pruett. 

Classmate Bry son Davis, who is a football and basketball player for the Bulldogs, agrees with the assessment of 
both women: "It's not every day you see a person with his disabilities do the type of work that he can do. He's better 
than most of us in here." 

"He's 1 times better than I am," chimed in another classmate. 

Other than his limitations, Jeffrey is much like any other 1 6-year-old boy. 

When asked what his favorite kind of art project was, Jeffrey responded through teaching assistant Herminia 
Zuniga: "Painting." 

When pushed further Jeffrey admits, "I like painting pretty girls the most," his response inviting a chuckle from his 
classmates seated near by. 



Mrs. Zuniga has been with Jeffrey since his fifth grade year. The two have developed a special bond. 

"Jeffrey is unable to communicate with his peers because they don't know sign language, so the only people he is 
able to communicate with besides us are Mrs. (Jane) Holt, Deaf Education teacher for Plainview schools, and his 
teaching assistants Glenn Truett and Herminia Zuniga," said Mr. Pruett. "At an age when you have a lot of questions to 
ask and no one to give the answers but those who can communicate with you, they have a special relationship that is 
deeper than what most students and their teachers have." 

Mrs. Holt indicates that, hopefully, the communication barrier between Jeff and his peers will lessen thanks to 
technology provided by the district. 

"We are in the process of having a laptop computer mounted on Jeffrey's wheelchair. It has Internet access and is 
loaded with AOL Instant Messenger, so his friends can tell when he is on line and they can write messages to him." 

"In an indirect way, having the computer will help Jeffrey with his fine motor skills, and strengthen his hands and 






shoulder muscles, but it is mostly for social interaction and 
communication," said Occupational Therapist Gretchen 
Foster, who holds therapy sessions with Jeffrey every 
other week. 

The Pruetts are well aware of the fact that their son is 
in a very precarious situation, but they have a "life is ter- 
minal" attitude and focus on the fact of living life to its 
fullest 

They feel that the special education program of the 
Plainview school district helps their son live the same way. 

"Everyone from Mr. Hightower to Mrs. Holt and Mrs. 
Zuniga and the therapists do an excellent job at letting 
Jeffrey experience school as normally as possible and by 
doing so enhance the quality of his life," Brian Pruett said. 




JeffPruett works on an art project. He is legally 
blind and has to be extremely close to the subject 
he is drawing. Jeffrey is entering a drawing in a 
national art contest for disabled students 
sponsored by Helen Keller Foundation. 



t 



5 



Baby Talk 

By Thomas Fields-Meyer and Frances Dinkelspiel 

Reprinted from the December 11, 2000 issue of People Weekly Magazine 

by special permission; © 2000, Time Inc. 



In her bedroom at her family's Benicia, California, home, Dionne Quan keeps on video dozens of Disney movies 
that she has watched over and over, dreaming of one day performing in the kind of films that have captured her 
imagination since she was a child. But she watches them in her own unique way, pressing her face right up to the picture 
tube. "My nose is right next to the TV so I can see whatever I can see," says Quan, 22. "Whatever I can't see, I 
manage to figure out." 

Visually impaired since birth, Quan has never let her disability stop her from pursuing her dreams. Now with a 
voice-over role as Kimi, an energetic Japanese toddler in Rugrats in Paris, the latest animated feature based on the 
Nickelodeon hit series, she's living them. "She's an incredibly talented kid," says the film's voice director Charlie 
Adler, 44. "There was no doubt when she came in. She wanted this. She had the ability to do this." 

And do it well. Producers had to make some minor adjustments to accommodate Quan's disability while they 
recorded, repositioning the microphone so it wouldn't pick up the sound of her fingers on her braille script; they also 
avoided last minute dialogue changes. But before long, any difference between Quan and her castmates melted away. 
"She gives a fresh immediacy to all of her lines," says her voice teacher Mike Matthews. " I forget she's not sighted. 
She actually sees more, if you will, than most of us do." 

That insight has developed through hard work and dedication - both from Dionne and her parents, Daryl, 46, and 
Lori, 44, who run a sewing machine and vacuum store in nearby Vallejo. The older of their two children (brother Daryl 
is 20), Dionne seemed healthy at birth. But four months later Lori noticed that her daughter's eyes weren't following 
the mobile twirling above her crib. A CAT scan showed she had some brain irregularities, and at 6 months she was 
diagnosed with hypoplasia - or underdevelopment - of the optic nerve. The unusual condition left her with extremely 
limited sight, allowing her to make out only some colors and vague shapes. 

5 



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Determined to help her daughter succeed, Lori rearranged her life to focus on Dionne, speaking to her all day and 
describing everything she did and saw to orient the child. "I wanted to help her as much as I could so she could achieve 
her dreams," say Lori, who told her daughter: "You want to act, go act. You want to play ball, go play ball." 

Quan didn't take long to choose. Drawn to reading, having learned braille at age 7, she liked to act out the 
characters in her storybooks. At 1 0, she enrolled in an after-school program at a San Francisco drama school, where 
she learned how to make her way around a stage. "Obviously things like pantomiming didn't work so well," she says, 
"because I couldn't imagine something in my hand when it really wasn't there." 

Then, when Quan was 1 2, her father heard voice-over teacher Samantha Paris on a radio talk show and took 
Dionne to study with her. "It just opened up a whole new world," Dionne says, because I didn't have to worry about 
gesturing." In fact, her impaired vision may have heightened her other senses. "She has an incredible ear," says Paris. 
"To hear this girl sing makes you cry." 

Having found her niche, Quan flourished, landing her first commercial job at 14 in an ad for a health maintenance 
organization. Voice-overs for such projects as jelly bean ads and children's cartoons, including Nickelodeon's The 
Wild Thornberries, followed. By the time she auditioned for Rugrats, Quan was a pro. "It was a challenge to find a 
voice that would meld with the ensemble and have the same youth, the innocence, the vitality," says talent director 
Barbara Wright, who chose Quan from 200 hopefuls. "Dionne had a unique, very dear quality." 

So dear, in fact, that she was promptly offered - and accepted - a recurring role on the Rugrats television show. 
Early next year Quan plans to move out of her parents' home and into one she will share with brother Daryl, a UCLA 
student, in Los Angeles, which presents its own challenges. "It's going to be a good experience," she says. "But in a 
way it's scary." To prepare, she got special training in programs that teach blind people basic skills. And for the first 
time, she learned to write in conventional script - for the express purpose, she says, of signing autographs. 



Blindness Isn't an Obstacle 

By Adam Shell 
Feb 16, 2001, Copyright 2001, USA TODAY. Reprinted with permission 

Laura Sloate still remembers the sting of rejection, the mean-spirited words, the blatant discrimination. While 
interviewing for her first job as a securities analyst in the late '60s - armed only with youthful enthusiasm and a master's 
degree in history - a research chief at a brokerage firm basically told her to forget about a career on Wall Street. "He 
said, 'You have three things against you: You're a woman; you can't see; and you're inexperienced," Sloate recalls. 
She proved him wrong. Today, she manages a $405 million stock portfolio even though she can't read a stock chart, 
scan a spreadsheet or view a hot new product. Sloate, 55, has been blind since detached retinas robbed her of her 
sight at age 6. The handicap hasn't stopped the determined Sloate from succeeding in the sighted world. She heads 
Sloate Weisman Murray & Co., an investment firm she co-founded in 1 974. She also manages the Strong Value fund, 
which gained 1 3% last year despite the stock market's worst performance in a decade. 

Most blind people only dream of Sloate's success. Of the estimated 1 .3 million Americans 22 to 50 who are legally 
blind, about half are unemployed, says the American Foundation for the Blind. And one in three blind people 1 8 to 64 
who do work earn less than $20,000 a year. 

Still, the fiercely competitive Sloate says sight isn't an issue. "Blindness isn't an obstacle," says Sloate, who has 
worked on Wall Street since 1 968. "It just forces you to do things differently." 

Like most on Wall Street, information is Sloate's lifeblood. "I'm an information junkie," she says. "If I went cold 

6 






turkey, I'd be in worse shape than a three-pack-a-day smoker without a cigarette." The trick - and the key to success - is 
getting data into her head. She spends her entire day doing just that. "My full knowledge input is through my ears," she says. 

ULTIMATE IN MULTI-TASKING 

It is 10 a.m. and the trading day is in full swing. While her guide dog, an 8-year-old German shepherd named 
Quartz, naps at her feet, Sloate is doing what seems like 1 things at once: Listening to breaking business news that 
spills out of her PC's speakers at 320 words per minute. 

Checking stock quotes. She hits the F3 key on her PC and punches in the symbol C. A robotic voice responds 
with a quote for Citigroup, her top holding: "C ... Bid ... 50 ... Point ... 5265 ... End ... Ask ... 50 ... Point ... 750 ... 
End." Head trader Michael Adamson serves as a human stock ticker, updating Sloate via speakerphone. 

Reading e-mail. She double clicks on a message from a Wall Street analyst dissecting Citigroup's earnings report 
released before the bell. The computer reads the e-mail's content to her. 

"Laura gets through inhuman amounts of information," says Chip Rewey, senior portfolio manager at Sloate's firm. 
Rewey sits directly across from his boss during the trading day, feeding her relevant tidbits from brokerage reports and 
trade magazines. Sloate retains everything. 

"She has the equivalent of a photographic memory," says Neil Weisman, who co-founded the firm with Sloate and 
left in 1 986 to start his own hedge fund. Not being able to see forces her to rely heavily on technology - and other 
people - to get things done. Friends and colleagues often serve as her eyes. "Maybe I can't tell whether the Gap's 
fashions are great, but I know enough people who do," Sloate says. If she needs to analyze a chart or spreadsheet, 
she'll ask a trusted business associate for help. 

Sloate doesn't feel sorry for herself or make excuses, but she says being blind often frustrates her. "Sometimes it's 
wanting to do something that I can't do alone, like riding a bike." There are professional obstacles, too. The stigma 
associated with being blind tends to close doors. If she were shopping for a new job, she suspects prospective 
employers would be reluctant despite her track record. Prospecting for new investors is also tougher. Sloate says 
many just aren't comfortable handing their money to a blind person. So she doesn't go out of her way to tell people on 
the phone about her disability. "When I show up with a dog they are at best skeptical," she says. "But that wears off 
when they engage me in conversation and figure out I'm not a total idiot." 

In fact, Dick Strong, founder of Strong Funds, admits that he talked to Sloate for 2 years on the phone and "didn't 
know she was blind." Co-workers and former colleagues describe her as fair, yet tough. "Some people like criticism 
to be delivered with a bouquet of flowers; you will not get that from Laura," says Donna Leone, the firm's chief 
operating officer who was hired 20 years ago as Sloate's personal assistant. Weisman, her former partner, says Sloate 
holds herself to the same high standards. "She's very tough on herself; she's her own worst critic." Always prepared, 
Sloate is described as loyal, caring and generous. Co-workers say she's a wonderful teacher, inviting members of her 
firm to dinner where she'll tell them what they're doing well and, of course, how they need to improve. She dotes over 
her dog, Quartz, like a loving parent. One evening long after the market closed, she plopped Quartz's tin dog dish on 
her desk and prepared dinner: low-fat cottage cheese mixed with dry dog food. Sloate says when Quartz underwent 
back surgery recently, she was "traumatized." 

Sloate likes being prepared. When a potential client leaves a phone message, for instance, she'll quickly research 
who they are, where they work, and if they 're on any corporate boards. When going somewhere for the first time, she 
checks which side of the street the building is on and where the entrances are. "She likes to be in control," Weisman 
says. When it comes to investing, Sloate looks for quality companies selling at cheap prices. But she won't buy a 



32 



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stock just because it's cheap: A catalyst, such as rebounding earnings, new management or a restructuring, must be in 
place. Toys R Us is a perfect example. Sloate recently started buying the stock on the belief that business would 
improve in the wake of the death or near demise of dot-com retailers, such as eToys. 

3:45 A.M. WAKE-UP CALL 

Keeping up with Wall Street's best isn't easy. Sloate is a workhorse who sleeps less than four hours a night. Her 
day starts at 3 :45 a.m. The minute she gets up she "flips on" the paper. Picking up the phone, she dials a number and 
keys in a six-digit access code. When the call connects, she gets a line-by-line account of stories published by top 
national newspapers. She feeds and grooms Quartz while "reading." It's common for Sloate to leave employees voice 
mail at 4 a.m. Working out comes next. "It's the way I get my stress relief," she says. By 5:30 a.m. she's climbing up 
and down 75 flights of stairs in her Manhattan apartment building. A personal trainer arrives at 6 a.m. to spot her 
during her workout with weights. The fit 5-foot-6, 1 1 0-pound Sloate bench-presses 60 pounds 60 times - in three 
consecutive supersets. She arrives at her Park Avenue office by 8:30 a.m. Her day extends well beyond trading hours, 
too. It's 6:45 on a Thursday night in early January and Sloate is still hard at work. As usual, she's doing two things at 
once. "I get bored fast," she says. It's not unusual for her to have two people reading newspaper and magazine articles 
to her simultaneously. This night, Tracey Paleo, an actress, is reading Sloate stories from The Financial Times. At the 
same time, Rewey is reading her breaking news from the Internet. Sloate "reads" in several ways. On weekends, she 
scans some 300 pages of magazine articles and other print materials into her PC, which converts it into voice. Soft- 
ware also lets her read Internet articles. Then, of course, there are the real-life readers like Paleo. The pay for the 
aspiring actresses and university students Sloate hires to read: $8.50 to $ 1 an hour. Hidden away in a corner office 
that doubles as a makeshift library, the readers can be spotted reading books and articles out loud into tape recorders. 
Managing money and analyzing stocks is the best job in the world, says Sloate, who also finds time to teach a securities 
analysis course at Columbia University. But her true passion is opera. She has attended about 1 ,000 performances, 
mostly at New York's Metropolitan Opera, where she's a board member. "The opera is very civilized," she says. And 
rock or rap? "It's just noise. My ears are very sensitive." 



A NIGHT AT THE OPERA 

One night last month, a trip to a performance of Giuseppe Verdi's La Traviata at the Met illustrated Sloate's 
organizational skills. Because of long work hours, Sloate typically doesn't arrive at the opera house until the start of the 
second act. Prior to the season, she requests a timetable from the Met that lists when all the acts begin and end. "The 
joke at the opera is I'm an expert on the second and third acts," she quips. On this night, Sloate leaves her Park 
Avenue office at 8 : 1 5 p.m. sharp. Her driver, Michael Piniero, zooms uptown in a van. Dinner is served in the back 
seat. Sloate dines on popcorn and coffee. Arriving at the Met around 8:40 p.m., a few minutes too early, Piniero waits 
patiently on a nearby street. At 8:45 p.m., Sloate gives the word, and Piniero drives into the parking garage for the 
drop-off. Once inside, Sloate, with Quartz at her side, takes charge. "Go up the stairs. Walk to the left of the bar. The 
doors to the orchestra are straight ahead. We're in Row D." The lights dim just after Sloate sits down. The curtain 
rises and the crowd applauds before a note is sung. Sloate says the audience must like the scenery. "New Yorkers are 
very vocal about what they like and don't like. I've heard them boo the scenery," she says. 

Sloate, who has never married, has two brothers and grew up in Brooklyn. She spent much of her childhood at home, 
where her mom, Elsie, now 94, would read to her. Her eye troubles kept her out of school until 1 4, her freshman year in high 
school. "I had a difficult time," Sloate says ofher socialization problems at school. Her interest in stocks began when she was 
1 0. Her dad, Kelly, who was an investor, would call her in on New Year's Eve to calculate the value ofhis portfolio. She says 
she'd do the calculations in her head faster than he could with a pad and pencil. She's still good with numbers, Rewey says. 
When Sloate gets the bill at a restaurant - and she eats out every night - Rewey says he'll read her the price of every item, and 
she is able to calculate the total, including tax and tip, to the penny in her head. 

She landed her first job in 1 968 with a tiny mutual fund that went out of business 4 months later. She then landed a 

8 



job as an analyst at a small firm where she earned $200 a week, $ 1 40 of which she paid to a secretary she hired to read 
for her. In 1 972, she landed a job as an analyst at Burnham & Co. "Laura is in love with the business and committed 
to it, sadly, without a hell of a lot of other distractions," says author Peter Tanous, who wrote a chapter about Sloate in 
his book, Investment Gurus. Sloate herself admits that she's so devoted to and energized by her job that retirement h^ 
is out of the question. "I don't enjoy being away from the business," she says. "I could have retired a long time ago." ^ 

Just a Typical Teenager 

By Kate Moss, Family Specialist, TSBVI, Texas Deafblind Outreach H 

Kassandra Marie Luna, otherwise known as KC, is just a typical teenage girl from Laredo, Texas. She likes to 
spend her time talking on the phone to friends, listening to her CDs (preferably rap), and practicing drum cadences. 
During the school year she attends her local school, where she takes a regular schedule of academic classes. She is a 
good student with an easy going personality. Her qualities are apparent to all those who know her, which led to her 
being voted the 1999 Christen Middle School Homecoming Queen. 

Although she enjoys her experiences in her home school, she likes to attend summer school classes at Texas School 
for the Blind and Visually Impaired. It's nice to be around other kids facing the same or similar challenges. She also 
likes learning more about technology for people with visual impairments. 

Some of her other favorite things include visiting relatives in San Antonio, Houston and other parts of Texas. She 
also likes taking vacations with her parents, Sandra and Luis Ramirez. 

KC was born prematurely and has Retinopathy of Prematurity which resulted in her becoming functionally blind. 
Despite some of the challenges her visual impairment adds to life, KC plans to graduate from a university with a degree 
in rehabilitation counseling. She would like to live in a larger city, marry and have children eventually. 

When asked not long ago how would she change the world if she could, KC replied, "...by giving teenagers much 
more freedom to do what they like, excluding anything having to do with a criminal nature. I would try to make people 
understand the blind more and have them stop being overprotective of us." 

A Celebration of Communities and Connections: 
The 2001 Texas Symposium on Deafblindness 

By Kate Moss, Family Specialist, TSBVI, Texas Deafblind Outreach 

It was a dark and stormy night when families, professionals and paraprofessionals from across Texas began arriving 
in Dallas for the 200 1 Symposium on Deafblindness. Despite the terrible weather typical for Texas in February, spirits 
were high as people gathered in the registration area to renew old friendships and make new connections. The 
Symposium that followed over the next two days proved to be both a valuable training opportunity and an event that 
celebrated the community of people who are connected by deafblindness. 

The Friday morning general session opened with a welcome by Outreach Director, Cyral Miller, followed by a 
"state of the State" message from Marty Murrell, Texas Deafblind Project Grant Director with Texas Education 
Agency. The almost 400 individuals in attendance were then treated to a keynote address from Cathy Allen, parent of 
a young girl with CHARGE Syndrome who is deafblind. Cathy set the tone for the entire conference by reminding us 
of the importance of collaboration between the family and the professionals in achieving quality services and program- 
ming for a child with deafblindness. She made us laugh and also cry with her comments on the joys and struggles of 
parenting a child with deafblindness and navigating the educational and medical systems. Cathy was definitely a tough 
act to follow. n 




Probably the only person brave enough to take on the challenge of 
following Cathy was the next scheduled speaker, Dr. Jan van Dijk of the 
Netherlands. His general address, "Stress: The Destroyer of Healthy 
Brain Formation," reviewed information about how stress prevents the 
growth of neural networks in the brain of a person with deafblindness. In 
addition to giving the general presentation, Dr. van Dijk presented three 
other breakout sessions over the next two days, including a discussion of 
the essentials in his methodology, delayed manifestations of Congenital 
Rubella Syndrome, and information on a new CD-ROM curriculum on 
assessment of persons with deafblindness. 

Cathy Allen, a parent from Mesquite, Following the keynote and general session, breakout sessions were 

Texas, shares the joys and struggles ^ e \^ on Friday afternoon and Saturday morning. There were many won- 
of collaborating with professionals. derful speakers, and most participants had a great deal of difficulty decid- 

ing which sessions to attend. Some of the speakers presenting during these sessions included Barbara Miles, Jim 
Durkel, Millie Smith, Cathy Allen, Kathy Williams, Marsha Dunn Klein, Marlyn Minkin, Kim Conlin, Fran La Ware, 
Deanna Peterson, Lauren Lieberman, Maria Velarde Bove, Tom Miller, Sally Prouty, Linda Mamer, Melvin Marx, 
Casey Grim, Chris Montgomery, Tish Smith, Sandra Davenport, David Wiley, CC Davis, Steve Schoen, and Jeanne 
Reeves. Topics included information on touch, communication, routines, Usher Syndrome, CHARGE, Congenital 
Rubella Syndrome, assistive listening devices, family issues, assessment, home life, interveners, sexuality education, 
orientation and mobility, braille, feeding issues, self-determination, and mental health issues. 






A new feature of this year's Symposium was the presentation of four 
awards during the Saturday luncheon. We hope this will become a regular 
feature of future Symposiums. Each year preceding the Symposium on 
Deafblindness a nomination form will be published in the Summer edition of 
SEE/HEAR. Anyone may nominate individuals for each of the four awards 
and return the form to Texas Deafblind Outreach. A committee made up of 
individuals with deafblindness, family members, educators, interveners, and 
rehabilitation staff working with individuals who are deafblind will review the 
nominations and select the recipients. Awards will be presented every other 
year at the Symposium on Deafblindness. The awards are the Trail Blazer 
Award, the Intervener Award, the Excellence in Education Award, and the 
Ann Silverrain Award. 




Dr. Jan van Dijk explains 
the impact of stress on 
individuals with deafblindness. 



The Trail Blazer Award is given to a family member who has, through their 
advocacy or efforts on behalf of their family member with deafblindness, blazed a trail that has made it easier for other 
families who follow. This year's Trail Blazer Award was given to the parents whose advocacy efforts resulted in the 
first school services in Texas for children with deafblindness. They included Gail and Paul Abraham, Mary and Dick 
Behnke, Jackie and Everett Bryan, J. W Carter, Larry and Evelyn Clark, Wandene and Wes Coughran, Angie Dugan, 
Lloyd and Fay e Eller, John and Geraldine Ellis, Sandra and Beau Faircloth, Marion and Lynn Freeman, Marilee and 
Clay Frost, Holton and Rita George, Richard and Joyce Hixson, Robert and Geneva Koonce, Vidal and Yolanda 
Maldonado, Patricia McCallum, Lorene and D. W. Murphy, Betty Murphy, Celestine and Riley Rand, Gilbert and 
Socorro Salazar, Delia and Andres Sanchez, Margaret and Michael Seguin, Homer and Mary Smith, Annie and 
Garland Wade, Evelyn Ware, and Anita Wheat. Accepting the award on behalf of these families were Evelyn and 
Larry Clark, Marion Freeman, Patricia McCallum, and Celestine Rand. Each of these families are still involved in 
supporting individuals with deafblindness. Dr. Evelyn Clark is a school principal in Houston and currently has a young 
deafblind student at her school. Marion Freeman is the Treasurer of DBMAT. Patricia McCallum is the Secretary of 
NFADB and a former Executive Director of DBMAT. Celestine is a DBMAT Regional Coordinator in ESC Region 
1 8, the Midland/Odessa area. \ q 



The Intervener Award is given to an intervener who has demonstrated excellence in supporting a child with 
deafblindness and whose efforts have contributed to the success of the intervener model in Texas. This year's award 
went to Ann Bielert, who has served as an intervener for four different children with deafblindness and was one of the 
first official interveners in Texas. Ann has worked hard over the past nine years to improve her skills and knowledge 
about deafblindness through onsite visits from Outreach, participation in workshops, and involvement in the intervener 
training meetings. She has also shared her expertise with others by presenting at Outreach sponsored training, and at 
the Canadian Deaf-Blind conference held in Vancouver in 1 998. Ann also serves on the Texas Deafblind Outreach 
Advisory Board. 

The Excellence in Education Award is given to an educational professional who has made a long-term commitment 
to excellence in education for Texas students with deafblindness. Karen Buchine, Teacher of the Deaf and Hearing 
Impaired, with the Regional Day School Program for the Deaf in Alief, Texas was the first recipient of this award. 
Karen has worked with numerous deafblind children and has been a strong advocate for quality programming. She has 
also been a valued collaborator with Texas Deafblind Outreach, serving on our Advisory Board and helping with many 
special projects. 

Our final award, the Ann Silverrain Award, is given to a person who has made an extraordinary commitment to 
improving the lives of individuals with deafblindness in the Texas. Randy Feille, Supervisor of Deaf-Blind Services for 
Texas Commission for the Blind, was given this special honor. Over the years, Randy has worked in many capacities 
to improve the lives of individuals with deafblindness. He began his career in deafblindness instructing deafblind 
students in after school activities and daily living skills at TSBVI's Deaf-Blind Annex. He's been a houseparent and 
instructor at Criss Cole Rehabilitation Center, and was instrumental in starting the Deaf-Blind Services department at 
Texas Commission for the Blind. He also served as the Co-Chair of the Texas Interagency Task Force for Future 
Services to Deaf-Blind from its inception in 1 979 until 2000. 

We are proud of these individuals and very thankful for the support they have given to Outreach through the years. We 
look forward to many more years of working together with them in support of individuals with deafblindness in Texas. 

Some of the most valued sessions at the Symposium were 
presented by individuals with deafblindness. Alberto 
Gonzales from Austin, Texas talked about his life and how he 
has overcome many obstacles related to deafblindness. 
Sharing this presentation with Alberto were two profession- 
als who help Alberto make connections in the world. These 
individuals are Nancy Kimbro, O&M Specialist, and Jackie 
Souhrada, Deafblind Community-Based Apartment Super- 
visor. One parent who attended Alberto's session com- 
mented that she now has hope for her son. Alberto helped 
her see that, despite being deafblind, her son can grow up 
and have a good life . This was a good reminder to me about 
how important it is for parents to have adult mentors and role 




Alberto Gonzales and Edwin Carter 

get to know each other at the Saturday luncheon. 



models who are deafblind. There is no one more experienced about deafblindness than a person with deafblindness. 
As professionals, we really need to utilize this expertise more often. 



Three other individuals with deafblindness, Andrew Prouty from Shoreview, Minnesota, Rosie Yanez from El Paso, 
Texas and Edwin Carter from Dallas, Texas also shared their experiences with us during the Symposium. These young 
adults were keynote speakers at our closing session on Saturday. All three of these wonderful individuals had participated 
in the "Self-Determination: Creating a Path to the Future" seminar held in conjunction with the American Association of the 
Deaf-Blind Conference in Columbus, Ohio during the summer of 2000. 

11 









8 







Andrew Prouty, Edwin Carter, and Rosie Yanez are 
three self-determined young adults. They presented 
inspiring closing keynote addresses at the 2001 Texas 
Symposium on Deafblindness. 



Andrew showed a video that his brother, Bill, had 
made as a graduation present when Andrew com- 
pleted high school. It featured highlights of Andrew 
growing up in the Prouty family. Andrew talked about 
the challenges he faces, the two jobs he currently 
holds, and his dreams for the future. He reminded us 
of the important role his family has played in his life, 
but emphasized how important it is for him to believe 
in himself. Andrew also co-presented with his mother, 
Sally Prouty, Coordinator of the Minnesota Deafblind 
Project, in a morning breakout session. A parent 
whose young child has CHARGE commented later 
that seeing Andrew renewed her. He made her even 
more determined to keep pushing for quality program- 
ming for her child. 



Edwin and Rosie were our final speakers. Their presentation had the greatest impact on me because I have known 
these "kids" for a very long time. Hearing them share their experience from AADB and talk about their dreams was 
very exciting. They were both eloquent about why the things they learned about self-determination are important. I 
know that Edwin and Rosie will always be leaders and friends. They will advocate for themselves as well as for others 
with deafblindness. They will face the challenges that come their way and persevere. I felt a deep sense of pride in 
knowing them; they truly inspired me with their message. I know that their parents, Linda and Jackie Carter and 
Suzanna and Oscar Santillon, their siblings, their friends, and all the professionals who have worked with them through 
the years are proud of them, too. 

From the comments shared by the participants and presenters, and among Outreach staff, I consider the 2001 
Texas Symposium on Deafblindness a success. I came away with a renewed sense of commitment to improving 
the quality of lives for all individuals with deafblindness in Texas. I also feel that my efforts will be magnified 
through the connection I have with a larger community of other committed individuals, throughout the state, the 
nation, and the world. 



Trends in the Use of Braille Contractions in the United States 
Implications for UBC Decisions 

By Sally S. Mangold, Ph.D. 

Reprinted with permission from 

The National Federation of the Blind, October 2000 Braille Monitor 



OVERVIEW 

The practice of educating blind children in regular classrooms with sighted peers is growing worldwide. Hundreds 
of blind children have been successfully mainstreamed during the last two decades. Many of them are now adults with 
excellent Braille literacy skills allowing full and independent participation in society. It is unfortunate that an even 
greater number of blind individuals did not acquire adequate Braille literacy skills while in school and therefore remain 
unemployed. Experience has shown that blind children can be successfully educated in the regular classroom if they 
have abundant Braille materials equivalent to the print materials provided to their sighted peers. In addition to instruc- 
tion from the regular classroom teacher these students must receive supplementary instruction from a teacher with 
knowledge of the Braille code. 

12 



The Unified Braille Code (UBC) committees are working diligently to create a more efficient Braille system for 
the English-speaking countries. Committee II is responsible for the selection of a recommended list of Braille contrac- 
tions to be incorporated into the revised literary code. It is important that the members of Committee II decide which 
Braille contractions promote rapid and accurate Braille reading and writing in light of contemporary pedagogical issues. 
The author fervently hopes that this paper will stimulate an interest in documenting contemporary pedagogy and con- 
sidering the opinions of leading educators in all English-speaking countries before establishing official code changes. A 
new Braille code should be both appropriate for the students of today and easy to implement. 

CURRENT TRENDS 

The Braille literacy movement in the United States is expressed by the actions of two major groups. There is an establish- 
ment movement whose members represent various governmental agencies, private agencies, Braille code specialists, Braille 
transcribers, and Braille embossing houses. Their concerns often center on changing technology as it relates to Braille 
production using the present Braille codes. They continue to adhere to the official Braille codes during production but would 
welcome changes in the codes that result in a more consistent and reader-friendly product 

There is also a consumer/educator-driven movement whose members represent teachers, parents, and blind con- 
sumers of all ages. They support the efforts of teachers and consumers who for many years have quietly made changes 
in the Braille literary code and its uses. The changes relate directly to the use of certain Braille contractions and a 
greater use of letter-by-letter Grade I Braille. These deviations from the official code are occurring in an attempt to 
represent print formats used in regular classrooms more accurately. New technology allows the gradual introduction of 
contractions as each student reaches developmental milestones. 

When is unconnected Braille used? Which Braille contractions are being eliminated? The outstanding work of 
Committee II and its recommendations for changes in the Braille code highlight the most frequently requested code 
changes by both Braille literacy action groups. Committee II recommends the deletion of ble, com, dd, to, into, and by. 
There are also recommendations for certain changes regarding the use of specific short-form words. 

A growing number of educators are eliminating four groups of contractions in addition to those recommended by 
Committee II: 

• Whole-word lower contractions that are identical in configuration to upper single letter whole-word contrac- 
tions. They include be, were, his, was, in, and enough. These lower contractions are not easily read by many 
students, even at advanced reading levels and even when contextual clues are plentiful. 

• Double-letter lower contractions that are identical in configuration to single letters. They include bb, cc, dd, 
ff,andgg. 

• Two-cell contractions that begin with the dots 5-6. They include ence, ong, ful, tion, ness, ment, and ity. 
Confusion between letters preceded by the letter sign and these contractions often occurs. 

• The two-cell contractions that begin with dot 6, ation and ally. These contractions are often interpreted as 
capital letters rather than contractions. 

All of the above contractions are somewhat difficult for beginning Braille readers to identify in short phrases, and 
many are extremely difficult to identify when isolated in word lists. I personally support the elimination of all of the 
above-mentioned problem contractions. 

Many educators and consumers believe that unambiguous contractions that have unique configurations, for ex- 
ample, er, ar, ed, should be maintained and used when the students have reached upper elementary developmental 
milestones. Basic concepts of alliteration and phonetic word construction will have been mastered at this level. 

13 






HOW IS A MODIFIED BRAILLE CODE BEING USED? 

Minnesota policy 

An entire region of Minnesota has adopted a policy of Grade I Braille in the first year of school. Gradual introduc- 
tion of Grade II contractions takes place during the subsequent years. 

Discussion: 

The teachers involved in the pilot program reported that after one year they have observed higher academic 
achievement scores in reading rates and reading accuracy in children using Grade I than was previously seen in children 
using Grade II in the first year of school. The grade I users showed greater interaction and participation with sighted 
children both academically and socially. Grade I can easily be incorporated in books, games, spelling competition, and 
life-skills labeling. 

Multiply Impaired Children 

Multiply impaired blind children are being introduced to Grade I Braille first. Short-form words and Grade II 
contractions are introduced after thorough mastery of the alphabet and beginning reading has been achieved. 

Discussion: 

Multiply handicapped and learning-disabled students must have extensive practice at each level before being intro- 
duced to new symbols. The presentation in Grade I is consistent in configuration whenever used. The teachers report 
a reduction in Braille letter-reversal reading errors when Grade I is used for an extended period of time. 

Beginning Readers 

Grade I is being used more with beginning readers of all ages. 

Discussion: 

Beginning reading exercises, spelling, and introduction of new vocabulary often show words in isolation. As the 
reading vocabulary increases, the majority of contracted words may be more easily understood in context. 

Contractions 

Certain single-cell lower contractions and certain two-cell contractions appear to be difficult for many readers to 
interpret with confidence even at more advanced reading levels. The problem contractions, in addition to those 
identified by Committee II, are his, were, was, be, in, enough, bb, cc, dd, ff, gg, fill, ong, ment, ity, ation, and ally. 

Discussion: 

Undesirable hand movements have been observed as Braille readers frequently recheck these contractions in order 
to discern whether they are reading an upper- or a lower-cell contraction. It is almost impossible to identify single-cell 
lower contractions when they appear in columns. The overwhelming majority of educators with whom I speak want to 
see these contractions eliminated from the code. Until such a decision is made, the problem contractions are often 
being written in Grade I. 

New Technology and Braille 

Grade I is required for the use of new technology. Voice-output and dynamic Braille-display devices fre- 
quently require the use of both Grade I and Grade II Braille when entering commands for operations. 

Discussion: 

We have many myths in education. For years it has been said that a student would become confused if presented 
with both Grade I and Grade II Braille. It was feared that the use of both codes would result in inaccurate writing and 
unacceptable practices. One need only observe a few of the thousands of capable blind children and adults who use 

14 



technology to produce papers and reports to see that a well trained individual can successfully use both codes inter- 
changeably. 

Grade I and Newly Blinded Individuals 

Grade I Braille is used for instruction of newly blinded youth and adults. 

Discussion: 

New teaching methodologies use Braille labels in Grade I for an extended period of time before introducing books. 
The first books are in Grade I. Instructors believe that greater immediate success in using Braille to complete daily 
tasks and regain literacy skills increases self-confidence of newly blinded youth and adults. 

Parents and Regular Classroom Teachers 

Parents and regular classroom teachers are learning and using Grade I Braille. 

Discussion: 

Parents and regular classroom teachers are learning the Braille alphabet and numerals when their blind students are 
first introduced to Grade I Braille. They are correcting assignments, writing accurate examples in Braille for the 
students, and enjoying Braille themselves. Their enthusiasm encourages the students. They can provide immediate 
feedback to the children about their performance and quickly correct errors. Many blind students who are 
mainstreamed do not have the services of a vision teacher each day and often receive no feedback about the Braille 
they produce until several days have elapsed. 

Beginning writing 

There is a rapidly growing trend to use Grade I Braille for writing at beginning levels. 

Discussion: 

Teachers and sighted peers spell words to the blind child one letter at a time. The blind child writes the words one 
letter at a time. The presentation of Grade I in reading books provides an accurate model for the young child who is 
already writing Grade I. I believe that we will continue to see even greater use of Grade I Braille in the future. 

A HISTORY OF CONTROVERSY 

A Braille literacy movement took place in France during the 1 830's. No one wanted to change the traditional 
training for the blind. The raised-print letters used for classroom instruction were very difficult to produce and were 
read very slowly by touch. The resistance to change resulted from a belief that, because of the common typesty le, any 
sighted person could assist any blind child, which made education more accessible to the blind. Braille as an official 
educational medium was accepted only after blind high school students insisted on using the code because it allowed 
them to write for the first time. One brave teacher convinced the school board to adopt Braille as an official code after 
he observed improved interest and achievement among his students who were using Braille. 

We need to listen to blind consumers today. They are demonstrating new uses for Braille and articulating unre- 
solved needs. The blind adult population has demonstrated its immense ability to infuse new symbols into the official 
code and use technologies that require the mastery of both Grade I and Grade II Braille. 

Our present code was never thoroughly researched when it was adopted early in this century. The practice of using 
Grade II only was a unilateral decision by Bob Irwin, then president of the American Foundation for the Blind. His 
main impetus was to provide a Braille reading code that would parallel the sight-reading approach used in regular 
classrooms during the 1 930's. The U.S. was just recovering from an economic depression, and he showed that using 
Grade II could save money because it took less paper. His decision was opposed by the national organization of 
educators, to no avail. 

15 



3 







From 1910 until 1 950 there was a commonly used method for teaching Braille. Grade I Braille (alphabet only) 
was taught in the first three years of school. Grade 1-1/2 (alphabet plus 44 one-cell contractions) was taught during the 
next three years. Grade II Braille (alphabet plus 1 89 one-cell and two-cell contractions) was taught in year seven and 
used through year twelve. The most difficult contractions to learn were not introduced until the seventh year and were 
taught within an educational system that provided Braille instruction every hour of the school day. 

The cognitive demands of young blind children are greater than those required of their sighted peers if all of the 
contractions are presented during the first year of school. The number of abstract symbols is much higher in Braille than 
in print. The correct application of many contractions requires discrete spatial interpretation that is difficult for most 
young learners. 

The majority of blind people educated by the three-levels-of-contractions method were good Braille readers. They 
exhibited proficiency in writing, spelling, and grammar. The vast majority became independent and self-sufficient 
adults. These were blind students with average and above average academic abilities. They could probably have 
excelled with any code of Braille. Today's population of students is very different, and their learning needs must be 
addressed when selecting acceptable Braille contractions. The research by Troughton and Mangold supports the use 
of Grade I for certain purposes. The data indicate that applications for the use of Braille must be considered in the 
selection of the most appropriate code relative to a given purpose. 

RECOMMENDATIONS 

• The deletion of certain contractions, as recommended by Committee II, is appropriate: ble, in, to, into, com, 
dd, and by. The additional contractions that should be eliminated are bb, cc, dd, gg, ful, ong, ence, ment, 
tion, ity, ally, and ation. 

• Certain limitations on the use of short-form words are appropriate as recommended by Committee II. 

• The code used to introduce Braille should be uniform as much as possible throughout the world so that 
materials may be shared and easily understood by blind learners of all ages and all nationalities. 

• The beginning students reading Braille should have a one-to-one correspondence in Braille to print materials 
given to sighted peers so that they can interact more fully in the regular classroom. 

• The introduction of two-cell contractions should be postponed until the blind learner has mastered basic 
reading and spelling. 

• The members of Committee II should share information about the teaching practices in their countries. 

• The final report for Committee II should include a description of teaching methodologies that contemporary 
societies consider sound educational practices. 

• Tradition does not validate practice. "Now is the time to shake ourselves free of old ideas and traditions. 
We should not look back but rather go with youth, who always look toward tomorrow." Helen Keller, 1 93 1 

REFERENCES 

Mangold, Sally S., "The Braille literacy movement: A dichotomy of action," Getting in Touch with Literacy, 
1997, p. 9. 

Ryles, Ruby, "Early Braille Education Vital," The National Braille Press Release, Spring/Summer 1 998, p. 3. 

Troughton, Marjorie, One Is Fun, Toronto: The Canadian National Institute for the Blind, 1 992, p. 1 1 9. 



16 



A Time to Embrace 
Parents of Special-Needs Children Find Respite in Night-Out Programs 

By Laurie Fox / The Dallas Morning News Reporter 
02/24/2001 - The Dallas Morning News - Reprinted with permission 

Editor 's note: This article originally appeared in The Dallas Morning News. By going to their website at this 
link, Ministries for the Disabled, <http://www.dallasnews.com/extra/292656_q_disabled_24rel.html> you will 
find links to other resources such as the National Organization on Disability - Religion and Disability Program 
<http://www. nod. org/acctallies. html> andJoni and Friends <http://www.joniandfriends. org/>. Their address 
is P.O. Box 3333, Agoura Hills, CA 91376; phone: (818) 707-5664. 

As 8-year-old Sam Beller smiles, his blue eyes turn into crinkled slits and his eyebrows seem to dance on his 
forehead. He can't move much of the rest of his body, but a jaunty turn of the head or a gleeful gurgle can say a lot. 

"You can tell by the sounds that he makes and his expressions what he's thinking," said Elizabeth Laird, a vocational 
nurse who spends her Friday nights caring for medically fragile and special needs children like Sam. 

Sam, who has cerebral palsy and severe scoliosis, is a delight to almost everyone who meets him. He's also a lot 
of work. Every few weeks, his parents get some free help from Friday NITE Friends, an outreach ministry of Custer 
Road United Methodist Church in Piano. The parents' night out program for special needs kids is rare because it also 
takes in the children's well siblings. More than 80 families from throughout the area take part in the weekly, four-hour 
program, which is staffed by vocational and registered nurses as well as volunteers. 

Three other local churches - Arapaho Road Baptist Church in Garland, First United Methodist Church in Denton 
and Highland Park United Methodist Church in Dallas - have started efforts, giving the area an unusually high number 
of programs that care for all the children in a family, regardless of whether they are disabled. The programs are all free 
and families do not have to be members of the congregation. And they are flourishing at a time when advocates are 
pressing places of worship to move beyond accommodating people with disabilities to welcoming and valuing them. 

"A full life of faith is more than worship," said Ginny Thomburgh, director of the Religion and Disability Program of 
the National Organization on Disability in Washington, D.C. "Children and adults with disabilities have gifts and talents 
to bring to their congregations. The most important accommodation we can offer them is the gift of friendship." 

The parents and workers at Friday NITE Friends agree. (NITE stands for Nursing Interventions in a Caring 
Environment). "There's a premium that you pay when you have a special needs child," said Kyla Prestwood, Friday 
NITE Friends director, who has a 1 7-year-old multiply handicapped daughter. "Time is the one thing that these parents 
need the most but they don't have. And for them to have an adult caregiver just take over for a little while is very 
expensive." 

Ms. Prestwood tells tale after tale of initially hesitant parents who, when they finally admit that they need time away 
from their children, cry with relief. Some couples eat dinner and catch a movie. Others go shopping. They return 
home for a nap or, in the case of one mother, a bubble bath. The parents take a pager with them when they leave 
Custer Road at 6 p.m. and can call to check in. Most return before the 1 p.m. pick-up time, but even a few hours can 
make a big difference. 

"Uninterrupted time is a treasure," said Darla Andrews of Piano after dining at a restaurant with her husband, Van. 
The couple's twins, 7-year-old Tom and Will, are autistic. Will is mentally retarded and visually impaired. Their 
brother, Jim, 5, is speech-delayed. Sister Katie, 9, is in an accelerated classroom at school and has no disabilities. 

17 



"We don't know normal in our house," Ms. Andrews said. "Friday NITE Friends is a real break for us. It's really hard 
to put your faith in people to be able to leave your kids for a long period of time, but we have to. I hear horror stories 
of parents breaking up when they have all of these challenges." 

"Parents of special needs children can become very isolated and the stress can become overwhelming," said Ms. 
Thornburgh, who helped launch a national effort to make churches more accessible to people with disabilities. "These 
types of programs allow parents and their children to get to know one another and their families," she said. "That 
network is very important." 

The Rev. Mark Craig, pastor of Highland Park United Methodist Church, said the disabled community is under- 
served by churches. "These are the parents who aren't in church anymore because they just can't get away," said Mr. 
Craig, who also was the pastor of Custer Road United Methodist Church for 1 5 years. "What these churches are 
doing for these parents doesn't even come close to filling the need. If the churches don't do it, who will?" 

Melanie Lucido's son, Joseph, is 1 8 months old but functions as a newborn because of hearing and visual impair- 
ments and severe motor delay. He suffers seizures and needs help sitting up and rolling over. She began attending the 
Night Owls program at Highland Park United Methodist Church, held the third Friday of every month, after she 
realized that she and her husband, Michael, needed time away but couldn't afford it on their own. 

"The last year and a half has been unbelievably stressful," she said. "This gives our whole family a break. Our older 
son was able to be around others with special needs. It just seemed normal to him." 

Hilary Nelson coordinates the King's Kids special needs ministry at Arapaho Road Baptist Church. She said the 
2-year-old program, which includes a Sunday evening program, Sunday school and an adult special needs class, 
expanded into a Saturday evening parents' night out program last year. 

"For our church, it's really opened people's eyes and makes them more aware and comfortable with the disabled," 
she said. "The parents involved, a lot of them haven't had the time just to spend alone in so long they've forgotten how." 

Mr. Craig said many churches don't start such efforts because they don't see the need or they fear the expense of 
nurses and medical equipment. But, he said, with a congregation's support, they pay for themselves. 

At Custer Road, the Thanksgiving service gives the Friday NITE Friends group an opportunity to speak to the 
congregation and remind church members about those they're helping. The collection from those services helps fund 
the group. The program costs about $50,000 a year, and all the money comes from donations. 

"People think about this ministry and really count their blessings," said Carol Brady, a Friday NITE Friends coor- 
dinator at Custer Road. "Just helping these families makes you feel good." 

Organizers at Custer Road say they plan to start training other churches to launch similar programs. The church 
provided guidance and seed money to help First United Methodist Church in Denton get its weekly program, Friday's 
Kids, off the ground. 



"They [Custer Road] are inspiring other churches," said Rhonda Clark, the program's director. "Six years ago, 
there was only one program of this nature [in Texas], and now they're cropping up locally and throughout the country." 

When Sam's father, David Beller, arrives to pick him up at Custer Road, Sam grins and hums. Mr. Beller talks 
quietly with the nurses who have worked with him through the evening. The Bellers spent their evening away having 
dinner and shopping for tile flooring. They have to replace their carpet because of Sam's allergies. 

18 



"If we had to hire a nurse and a babysitter for four hours, it would cost us more than $ 1 00," Mr. Beller said, lifting 
Sam into his wheelchair. "Sam enjoys it here. We spend so much time taking care of his physical needs. He has social 
needs as well." 

As the Bellers prepare to leave, Ms. Laird, the nurse, tidies up the playroom. "People will say to me, 'This must be 
a depressing place,'" she said. "Are you kidding me? These kids fight [to get through] every day. They don't 
complain, and their parents don't either. It's inspiring." 

Friday NITE Friends meets 6-10 p.m. each Friday at the Custer Road United Methodist Church, Piano, 
phone: (972) 61 8-3450 or link to <www.crumc.org>. 

Friday's Kids meets 6-10 p.m. each Friday at the First United Methodist Church in Denton, phone: (940) 
382-5478. 

Night OWLS meets 6- 10 p.m. on the third Friday of each month at the Highland Park United Methodist 
Church in Dallas, phone: (2 1 4) 52 1 -3 1 1 1 or link to <http://www.hpumc.org/missions>. 

5 

King's Kids Parents Night Out meets 6-9:30 p.m., the first Saturday of each month at the Arapaho Road 

Baptist Church in Garland, phone: (972) 495-2223, ext. 73. Q 



I'm an Outreach Consultant 
Do I Really Want to Do Raised-Line Drawings? 

By Barbara L. DiFrancesco, Certified Braille Transcriber and Tactile Graphics Technician 

Editor s note: The TSBVI VI Outreach team is actively exploring instructional strategies and products that 
might help students effectively learn through a wide variety of tactile graphics. We were excited to find 
Barbara DiFrancesco in New Mexico and are pleased to be able to share some of her wisdom in the article below. 

The theme for this year's California Transcribers and Educators of the Visually Handicapped Conference was 
"Putting It All Together." In the field of services to the visually impaired, teachers live this mandate on a daily basis. 
Stretched thin, expected to have answers and solve problems for everyone they meet, teachers of the visually impaired 
do just that. They make things happen and put things together for many people. With all their responsibilities, do they 
have to be involved in producing tactile graphics, a.k.a. raised-line drawings? 

Last summer I had the opportunity to work with one of New Mexico School for the Visually Handicapped's 
Outreach teachers. In addition to continuing his regular scheduled work of teaching braille, giving O&M lessons, doing 
assessments, providing information about eye conditions, contacting parents and school administrators, etc., this Out- 
reach teacher organized in-service sessions for special education teachers, school braillists, and parents and students in 
his district. 

Recognized needs: special education teachers ~ more familiarity with braille materials. School braillists ~ basic 
training in the Duxbury translation program. Parents and teachers ~ a basic understanding of braille textbooks and 
raised-line drawings to help students with classwork and homework. He asked if I'd be willing to work with him. As 
a certified braillist with experience in transcribing textbooks and school materials, a Duxbury Braille Translator for 
Windows user, and tactile graphics technician, I had a contribution to make! Lucky for me: I was able to 
experience the joy of teaching a group of people so eager to learn, thanks to an Outreach teacher who "put it all 
together" for all of us. 

19 









s 



WHERE DOTACTILES FIT IN? 

Raised-line drawings are hot! In spite of that, some people still feel they are extraneous, a bother, too much to deal with 
when there are so many more important things to do. Considering some of the "cute drawings" we've seen in demonstrations 
for producing raised-line drawings, they may be right. However, tactiles have their place and serve a purpose. 

In a least restrictive environment, equal access to information is important. Students who are visually impaired are 
expected to perform at the same level as their peers. During test and assessment times, it can become evident that a student 
didn't do well because of poor map reading skills or the inability to read a chart or a graph. The tactile graphics technician 
made the raised-line drawings correctly, but the student was unfamiliar with the material and didn't know how to handle and 
read a raised-line drawing. The student had the mental ability to absorb the tactile form of gathering information, and the tactile 
readiness. But, the student was never taught how to use it, so it was useless under the fingertips. 

The lack of certain tactile skills can bring a score down, and that is unfortunate. A bright college student taking her teacher 
certification exam was quite dismayed at the amount of graphs she was expected to handle in the test She had a good grasp 
of the content, but her inability to deal with the material in a non-linear format affected her test score. A situation such as this 
shows the importance of developing in each student the basic tactile skills that demonstrate an ability to use information 
presented in various formats. This affects all subjects, and involves maps, charts, tables, graphs, diagrams, lists, schedules and 
figures. 

The use of tactiles (a.k.a. raised-line drawings) must be incorporated into the overall print-to-braille adaptation of material 
in a reasonable manner. The purpose for using tactiles, like all braille material, is to produce literate braille readers. A 
transcriber must translate every word in the print text, but not every illustration needs to be rendered as a drawing. A note can 
suffice. The formatting of these notes is to block in cell 5 and begin the note in cell 7, to provide an easy location cue for the 
tactile reader. 



To determine how to approach illustrations in transcribing a transcriber asks: Does the tactile reader just need to know 
there is a photograph and what it is? Then note that in braille. Does the picture caption or the text provide enough information 
about the illustration so that additional explanation is unnecessary? Then just use the caption and text. Is the illustration so 
complex that a written description is easier for the reader to grasp? Then you would write a description. 

However, if there is a skill inherent in an illustration that a student is expected to master, then a raised-line drawing is 
needed. Also, if a drawing and its key organizes a lot of information so it can be easily absorbed and studied, a raised-line 
drawing is in order. But then, when the tactile is under the fingers of the tactile reader, that person needs direction for its proper 
use: the meaning of signifying objects with codes and symbols; help with tactile readiness issues and how to hand scan (read 
and organize) tactiles; the purpose of a key; how to use the key as a study guide; etc. It falls to the teachers to "put it all 
together" and make sure the necessary instruction takes place when using tactiles. 

How can VI teachers keep track of this whole process? By becoming familiar with the basic skills required at each grade 
level. When a student who is visually impaired is expected to perform a task, incorporate the teaching of those skills into the 
goals of the educational plan. Work with a braille transcriber and/or tactile graphics technician to fulfill the directives of that 
educational plan 

For example: Johnny 'sEP evaluation at the end ofsecond grade established that he did well in that grade and is expected 
to function as well in third grade. When preparing Johnny's program for 3rd grade, look at the textbooks he will be using. 
Identify the basic skills he will be expected to master. Examine the braille textbook to assure that tactiles are present that will 
address those skills. 

If third grade social studies is the time for learning map skills and beginning to read charts and graphs, then the braille 

20 



transcription of Johnny 's social studies must contain enough examples of these types of tactiles for the teacher's use in teaching 
Johnny. If that is not the case, there is a need to find appropriate material and get the help of a local braillist/tactile graphics 
technician to produce the materials under your direction. Focus on the content and purpose of the tactile. Thus, the raised- 
line drawing becomes a powerful teaching aid. Johnny's whole class can benefit from his presentation at a show and tell. 

FORM FOLLOWS FUNCTION 

There are various production techniques for raised-line drawings. Each serves a different purpose. A transcriber needs 
to prepare masters that are error-free as to content and production technique. The master must be able to hold up for making 
many copies. The necessary skills for textbook production are acquired with time and experience. 

This is daunting for the teacher, but the good news is that a teacher's tactiles don't need to hold to the same standards. 
Here are a few teacher friendly techniques that are easy to learn and use, and serve the one-on-one teaching situation quite 
welL 

1. Drawing boards. Use a soft mat with thin mylar, and a ball-point pen. Just draw on the mylar, pressing hard 
enough to crinkle it. Teachers can use tactile examples for explaining a point; students can make personal drawings 
with notes for later study; parents can discuss school work and work with their children at home. Mylar is available 
from Howe Press. 

2. Puffpaper. This has many names. Basically, you need either a printer, photocopy machine, or a Sharpie pen; 
swell-touch paper to draw on; and an image enhancer (a machine that uses a laser beam to "raise" the lines in your 
drawing). This technique is easy and serves well in classroom, home and work situations. Repro-Tronics produces 
the Tactile Image Enhancer and TIE Junior; Human Ware produces P.I.A.F. (Pictures In A Flash); and American 
Thermoform produces the Swell-Form Graphics Machine. They all have puffpaper under different names: 
Swell-touch paper, Flexi-Paper, etc. 

Obviously, this technique involves equipment, therefore, you need budgeting support from your district. This 
technique is well worth the expense because it is so easy for teachers and students to use, is so adaptable, and is 
appropriate for all ages. In addition, there are groups who produce excellent math and science diagrams. The 
material is downloadable online, so it is accessible to any teacher or visually impaired student who knows how to 
use the technology. This is an excellent option, especially for high school and college level students. 

3 . Tooling/embossing and collage: spur wheels and mirror image. A bit more technical but still workable, if you keep 
your drawings simple and uncluttered. Draw on the front; then the mirror image appears on the back. The design 
is raised by the use of serrated-edged spur wheels. For this technique (tooling and embossing) a tactile graphics kit 
is available from American Printing House for the Blind. Collage or another technique is often combined with 
tooling to complete the image. 

4. Computer- Assisted Diagrams (CADs): The use of the Perkins or the computer can produce direct entry designs 
on braille paper, O&M maps, charts, graphs, etc. Collage or application of labels can complete the design. You 
can also use Wikki Stix, string, and so forth with glue. 

5 . Use of Overlay s: If there is a tactile in a textbook, but it doesn't contain the information you need for a particular 
lesson, you can provide a drawing on a clear sheet of mylar to enhance the information in the tactile. No need to 
start from scratch. For overlays, the mylar needs to be a bit stiff, like the consistency of a transparency. Use 
flo-pens to draw designs, complete the design with spur wheels and/or point symbols to raise the image. You may 
use Wikki Stix and apply desired textures to your design. 



Some of these techniques don't have much of a shelf life, and they are not intended for long-term use. They are intended 
to assist the teaching session, and serve as study tools for the student 

21 



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Leber's Congenital Amaurosis 

By Kate Moss, Family Specialist, TSBVI, Texas Deafblind Outreach 

I have recently received a number of requests for information about Leber's Congenital Amaurosis, a degenerative 
disease that results in a severe loss of vision. This disease is thought to be caused by abnormal development of 
photoreceptor cells in the retina or perhaps the extremely premature degeneration of the retinal cells. Typically a baby 
with LCA will have very reduced vision at birth although the retina may appear normal when first examined. Within 
months, however, parents will usually notice nystagmus - an involuntary, rhythmical, repeated movement of the eyes. 
Children with LCA account for 10-1 8% of all cases of congenital blindness. Vision in individuals with LCA varies 
greatly from relatively mild acuity problems (20/70) to no light perception. (Leber's Links, 200 1 ) 

Occasionally LCA may be confused with other retinal problems such as retinitis pigmentosa, congenital and heredi- 
tary optic atrophy, cortical blindness, congenital stationary night blindness, flecked retinal syndrome, and achromatop- 
sia. (Foundation Fighting Blindness, 200 1 ) Some children originally diagnosed with LCA were later discovered to 
have Joubert Syndrome, Alstrom Syndrome, and Senior-Loken Syndrome. Although hearing loss is not an identified 
feature of LCA, some childrenwith LCA in Texas also have hearing impairments. The 2000 Texas Deafblind Census 
identified ten such individuals and the 2001 Census identifies seven with both LCA and hearing loss. Some of these 
children were initially misdiagnosed as having Usher Syndrome. 

LCA is genetically passed through families, and both parents must be carriers. Each parent has one gene with the 
disease, paired with one gene that is normal. When each child is conceived he will inherit genes in one of four ways. ( 1 ) 
If he gets the two healthy genes from his parents, he does not have LCA and is not a carrier. (2 & 3) If he gets a 
disease gene from one parent and not the other, he will be a carrier but not have the symptoms of LCA. (4) If he gets 
the two disease genes from his parents, he will have LCA. This is referred to as an autosomal recessive pattern of 
inheritance. 

Children with LCA often have eyes that appear sunken or deep set. They may press on the eyes frequently; this is 
called oculo-digital reflex. Some children with LCA have cone-shaped corneas (Keratoconus) and cataracts that 
cause the corneas to become cloudy. By the time a child reaches adolescence, pigmentary changes occur in the retinal 
pigment epithelium (the supportive tissue underneath the retina). This is similar to changes that occur to the retina with 
retinitis pigmentosa, the vision condition associated with Usher Syndrome. This occurs because the blood vessels in 
the retinas become narrow and constricted. Unlike Usher Syndrome, where a progressive loss of vision is typical, 
vision loss in individuals with LCA usually remains stable through young adult life. Progression of vision loss later in life 
has not yet been clearly defined. Additionally, some individuals with LCA are very sensitive to light (photophobic). 
Children with some remaining vision are likely to be extremely farsighted as well. (Foundation Fighting Blindness, 2001 ) 

In some cases, individuals with LCA also show central nervous system complications. They may be developmen- 
tally delayed, have seizure disorders, or motor impairments. 

There is currently no treatment for LCA. However, there is a good deal of genetic research being done related to 
LCA. The Foundation Fighting Blindness notes that a gene for LCA has been isolated on chromosome 1 7. The 
Leber's Link website offers information from The Johns Hopkins Center for Hereditary Eye Diseases that indicates 
three genes associated with LCA: chromosome 1 7, a 65kD RPE protein, and CRX on chromosome 1 9. A fourth 
gene has recently been localized for this disease. In Texas, Dr. Richard Lewis with Baylor College of Medicine is doing 
ongoing research on LCA. Dr. Lewis is open to contact from families of children with LCA or who suspect their child 
of having LCA. Another contact at Johns Hopkins is Irene Maumenee. Contact information for both Dr. Lewis and 
Dr. Maumenee is listed below: 



22 



Dr. Richard Lewis, MD/MS Irene E. Maumenee, MD 

Professor, Department of Ophthalmology, Pediatrics, Professor of Ophthalmology, Medicine and Pediatrics 

Medicine and Molecular and Human Genetics Wilmer Eye Institute 

Cullen Eye Institute, NC-206 Maumenee Building, Suite 5 1 7 

Baylor College of Medicine The Johns Hopkins Hospital 

One Baylor Plaza 600 North Wolfe Street 

Houston, TX 77030 Baltimore, MD 21287-9237 

Phone: (713)798-3030 Phone: (410)955-5214 

E-mail: rlewis@bcm.tmc.edu E-mail: jhched@welchlink.welch.jhu.edu 

REFERENCES/RESOURCES 

If you are interested in connecting with other families concerned with LCA, there are a number of good websites 
available to help you with this. They also are a good resource for updates on research and general information about LCA. 

Leber's Links Website 

This website has good information on Leber's, links to other websites, chatrooms, listservs, newsletter resource, 
research news, and more. 

<http://leberslinks.m^yeUowconVfoundanon.html> 
The Foundation Fighting Blindness 

<www.blindness.org/leber.html> 
(888) 394-3937 

Meningitis 

By Kate Moss, Family Specialist, TSBVI, Texas Deafblind Outreach 



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The 200 1 Texas Deafblind Census data indicates that meningitis is one of the leading causes of deafblindness in our O 
state. Recently in Texas there has been several scares related to outbreaks of meningitis. What is this disease and what 

are some of the concerns associated with it? ££ 

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First of all, meningitis is not the same condition as encephalitis, although they both occur in the brain. Meningitis is 
the inflammation of the tissue lining of the brain and spinal cord, the meninges. Encephalitis is the inflammation of the 
brain itself. There are two broad categories of meningitis, viral and bacterial . q 

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Bacterial meningitis is more uncommon, but it can be extremely serious. Often times it is fatal, especially if not 
treated immediately. Those who survive this type of meningitis often have a severe disability as a result. Brain injury 
and deafness are two common results of this type of meningitis. Babies in the USA are typically vaccinated for one 
type of bacteria that causes meningitis, the haempohilus influenzae type b (Hib) strain. Because of this vaccination 
program, this type of meningitis has practically disappeared in this country. The other two types of meningitis are 
meningococcal and pneumococcal. Both of these bacteria are very common. In fact, at any one time, around 1 to 
25% of the population are carrying this bacteria, which lives on the back of the throat and nose. Usually these bacteria 
do not cause any real problems. 

A person who becomes sick with bacterial meningitis needs immediate medical treatment. Antibiotics are used to 
treat bacterial meningitis. According to the Centers for Disease Control, high fever, headache, and stiff neck are 
common symptoms of meningitis in anyone over the age of 2 years. "Symptoms can develop over several hours, or 

23 



they may take 1 to 2 days. Other symptoms may include nausea, vomiting, discomfort looking into bright lights, 
confusion, and sleepiness. In newborns and small infants, the classic symptoms of fever, headache* and neck stiflhess 
may be absent or difficult to detect, and the infant may only appear slow or inactive, or be irritable, have vomiting, or 
be feeding poorly. As the disease progresses, patients of any age may have seizures." (CDC Website, 2001) A 
diagnosis is usually made with a spinal tap. 

Viral meningitis is usually not as dangerous as bacterial meningitis although the symptoms often appear to be the 
same. About 90% of cases of viral meningitis are caused by a group of viruses known as enteroviruses. Herpes 
viruses and the mumps virus can also cause viral meningitis. There is no treatment for viral meningitis. People ususally 
get well on their own with plenty of bedrest. They are simply given plenty of fluids and also medicine to treat the fever 
and headaches. Viral meningitis does usually not result in other disabiling conditions and is rarely fatal. 

A person may have meningitis more than one time, although this is rare. There are vaccines for some types of 
meningitis. Someone showing any symptoms of meningitis, should immediately see a doctor who can determine the 
type of meningitis present and begin treatment. Even with viral meningitis, severe problems can result from dehydra- 
tion, especially in children and babies. 

Both types of meningitis are spread through contact with respiratory and bodily secretions. That is why one of the 
best preventions for meningitis is regular and thorough hand washing. It is usually not spread through casual contact 
like sneezing or coughing. 



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When a person has meningitis, there is usually a long-term recovery period. There are also some problems which 
can be expected immediately following hospitalization for this illness and may disappear in time. In children we see 
many behavioral changes that may be due, in part, to the trauma of being in the hospital. These include babyish or 
clingy behavior, bed-wetting, temper tantrums, problems sleeping at night, and forgetting recently learned skills. There 
are other symptoms, however, that may last longer, or even be permanent. These include general fatigue, recurring 
headaches, problems concentrating, short-term memory loss, clumsiness, giddiness, balance problems, depression, 
violent temper outbursts, mood swings, bouts of aggression, learning difficulties, tinnitus (ringing in the ears), joint 
soreness or stiffness, visual problems such as double vision and cortical visual impairment, and the possibility of 
deafness, brain damage, or seizures as mentioned earlier. ( Meningitis Foundation of American, 2001 ). 



REFERENCES/RESOURCES 

Meningitis Foundation of America Inc. 
7155 Shadeland Station, Suite 190 
Indianapolis, Indiana 46256-3922 
Telephone: (800)668-1129 
Outside North America: (3 1 7) 595-6383 
Web: <http://www.musa.org/> 



The Centers for Disease Control and Prevention 
1600 Clifton Rd. 
Atlanta, GA 30333 
Telephone: (800)311-3435 
Web: <http://www.cdc.gov/> 



The National Institute 

of Neurological Disorders and Stroke 

NIH Neurological Institute 

P.O. Box 5801 

Bethesda, MD 20824 

Phone: (800)352-9424 

Web: <http://www.nmas.nm.govmedm_and_medical/aUsorders/encmenm_doc.htm> 



24 



Attention: Individuals and Families with Usher Syndrome 

Drs. Judith Willner and Seth Ness, with Mt. Sinai Hospital in New York, are conducting a study to find the genes 
responsible for Usher Syndrome (hearing loss and retinitis pigmentosa) in Ashkenazi Jews. If you or a member of your family 
are an Ashkenazi Jew or of Ashkenazic heritage and have Usher Syndrome, or both hearing loss and vision loss that has no 
other known cause, your family may be eligible to participate. The possible medical advances and greater understanding of 
Usher Syndrome that may result if causative genes are found are the primary benefits of participation Involvement may be as 
simple as a phone call and giving blood locally or may involve spending a few hours at Mount Sinai Hospital in New York for 
vision and hearing tests at no cost to you. Call Drs. Ness or Willner at (2 1 2) 24 1 -6947, Dept. of Human Genetics, Box 
1 497, Mount Sinai School of Medicine, 1 Gustave L. Levy Place, NY, NY 1 0029, e-mail to < nesssO 1 @doc.mssm.edu>. 



Kate's Corner - continued from page 1 

The Natalie Barraga Award for this year was presented to Sports Extravaganza (see the Winter 200 1 SEE/HEAR) in 
recognition of excellence in public school programs for students with visual impairments. Yeah Kitra Gray and pals! 

The Outstanding Parent of the Year Award was presented to Leslie Fansler of Amarillo in recognition of outstanding 
advocacy and dedication to the interest of people who are blind and visually impaired. Leslie, parent of two sons - one with 
deafblindness, is also a PPCD classroom teacher. Leslie serves as DBMAT Regional Coordinator for ESC Region 1 6 and 
is active in that organization along with her husband, Keith. Leslie was also recently awarded the Milken Family Foundation 
National Educator Award as an outstanding educator. We are very proud of you Leslie. 

The Outstanding Student of the Year Award was presented to Will Conrad in recognition of outstanding achievement and 
performance in an academic career. Will graduates this Spring from Eanes ISD, near Austin. His former vision teacher, Ann 
Adkins, accepted the award on his behalf. He was at Rice University in Houston, attending freshman orientation, and unable 
to attend. Best wishes to you, Will, as you begin your college career! 



C/3 



The Virginia Bishop Award, presented in recognition of outstanding contributions to the field of early childhood for to 
children who are blind and visually impaired, was awarded to my teammates, Gigi Newton and Stacy Shafer. You gals have ^ 
long been considered the Dynamic Duo by your Outreach pals. Congratulations! 

o 

The Texas Chapter Award was presented to Blind and Visually Impaired Children's Program Coordinators of Texas O 
Commission for the Blind, in recognition of outstanding contributions to the lives of persons who are blind and visually 
impaired. We all know about the hard work and dedication of these Coordinators. Bravo ! 

O 

The Aubrey Boyd Tipps Memorial Award was presented this year to Angie Baird, TCB Vocational Counselor, in ui 
recognition of providing outstanding services in the field of placement of persons who are blind and visually impaired in 
competitive employment or sheltered workshops. Angie has placed fifty-one individuals in employment situations this year. 
That averages out to roughly one placement a week, excluding Christmas! Great job! 

The Sammie K. Rankin Memorial (Outstanding Member) Award was presented to Debra Sewell, former Outreach staff 
member and current TSB VI Curriculum Director. This award was given in recognition of outstanding contributions to the 
field of services for persons who are blind and visually impaired, and in particular for her work in developing the Assessment 
KIT and the Braille FUNdamentals Curriculum. Congratulations Debra! 

The Julia L. Young Award was presented to Melissa Whiddon in recognition of outstanding work with children who 
are blind and visually impaired. Melissa is the supervisor of the vision program in San Antonio ISD and a diagnostician 
who has worked hard to learn about the unique issues of children with visual impairments. We appreciate your 
dedication to this population. 25 











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Interesting Facts from the Year 2001 
Annual Registration of Students with Visual Impairments 

By Nick Necaise, APH Materials and VI Registration Coordinator, TSBVI Outreach 

The Annual Registration of Students who are Visually Impaired (VI) is the count of eligible students who are visually 
impaired in each school district of Texas as of the first Monday in January. The "as of date for this year's Annual 
Registration was January 2, 2001. This count is done for a number of reasons. 1) It determines the amount of funding 
the state receives to get materials from the American Printing House for the Blind. 2) Each region's State Supplemen- 
tal Visually Impaired (SSVI) funds are portioned out according to the number of VI students they have. These SSVI 
funds can help pay for things like Vision Specialists at the Education Service Centers, salaries of VI teachers and O&M 
Specialists, training workshops, family support and other Vl-unique needs as determined by plans within each region. 
3) It is a tool for statewide and regional planning. 4) It is a federal requirement. Here are some interesting facts from 
the registry that give us a picture of students in Texas with visual impairments. 

Total number of students registered - 67 1 9 (One student in a non-public school) 
Number of students who were on the 2000 registration but not on the 200 1 - 1 024 
Number of new students added to the 2001 registration - 1 142 

Braille readers - 335 Number of infants - 555 

Large print readers - 1 2 1 5 Number of preschoolers - 784 

Regular print readers - 1 4 1 7 Number of kindergartners - 374 

Auditory readers - 407 Number of districts with 1 or more VI students - 7 1 

Non readers - 2475 Number of districts with only 1 VI student - 1 90 

Number of legally blind students - 4502 Number of districts with 3 or less VI students - 393 

Number of students whose primary handicapping condition is visually impaired (VI) - 3902. The first 
handicapping condition listed is VI. The students may or may not have additional handicapping conditions listed. 

Number of students whose secondary handicapping condition is VI - 1 586. The primary handicapping 
condition listed is other than VI. 

Number of students whose third handicapping condition is VI - 1 026. The first two handicapping 
conditions listed are other than VI. 

Number of students who are VI only - 28 1 5. No other handicapping conditions are listed. 

Number of students with 2 or more handicapping conditions - 3903 

Number of students who are AI/VI or DB (Auditorially Impaired/Visually Impaired or Deafblind) - 375 
(Editor s note: There is a sizeable discrepancy between the number of children who appear on the VI 
registry as AI/VI or DB and the number that are listed as deafblind on the Texas Deafblind Census - see 
page 27. We 're trying to determine why these numbers are different because we want ALL children with 
visual impairment have to access to services and resources.) 

The region with the most VI students registered is Region 4 (Houston area) with 1428 students on the 
Annual Registration. 

The region with the least VI students registered is Region 9 (Wichita Falls area) with 79 students on the 
Annual Registration. 

26 



There are 42 Braille reading students at the Texas School for the Blind and Visually Impaired. 

1573 or 23.82% ofthe students on the 2001 Annual Registration receive instruction in Orientation and Mobility. 



The 2001 Texas Deafblind Census 

By Craig Axelrod, Teacher Trainer, TSBVI, Texas Deafblind Outreach 

The 200 1 Texas Deafblind Census, a federally required annual count of deafblind students in Texas, ages 0-2 1 , was 
recently completed. In January, Dr. Roseanna Davidson's Census project staffat Texas Tech University sent materials to all 
local school districts in Texas. Someone in each district, often a Teacher ofthe Visually Impaired, reviewed and updated 
information about students who had been reported on the 2000 Census, and helped coordinate the completion of forms for 
newly identified eligible students. In February, districts returned the Census forms to the Regional Deafblind Specialist at their 
Education Service Center (ESC). Deafblind Specialists reviewed the forms, checking for completeness and accuracy, then 
submitted them to the Census project staffwho compiled the information for inclusion in the Federal Deafblind Census. Each 
ESC recently received a final report of its regional data as well as a general statewide report. 

Most ofthe data gathered through the Census process is required and requested by the federal government. 
Additional questions reflect the need for information about Texas-specific issues. Regional Census reports are now 
being analyzed by ESCs to help clarify regional needs and develop deafblind regional plans. Deafblind Outreach uses 
the reports to identify trends and training needs. Demographic information is also shared with other state agencies for their 
use in planning future services. Some facts and figures from the 200 1 Texas Deafblind Census appear below. 



NUMBER OF DEAFBLIND STUDENTS 
IDENTIFED ON 2001 CENSUS 



NUMBER OF DEAFBLIND STUDENTS IN 2001 
COMPARED TO PREVIOUS YEARS 



ESC Region 


2001 Count 


1 


22 


2 


13 


3 


11 


4 


103 


5 


6 


6 


23 


7 


21 


8 


10 


9 


6 


10 


49 


11 


70 


12 


17 


13 


31 


14 


10 


15 


30 


16 


16 


17 


36 


18 


31 


19 


25 


20 


48 


TSBVI 


17 


TSD 


11 


State 


606 



Year 


Total 


Male 


Female 


C/5 


01 


606 


345 


261 


§ 


00 


627 


354 


273 


P0 


99 


691 


382 


309 


o 
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98 


775 


438 


337 


97 


720 


404 


316 


^ 

o 


96 


664 


380 


284 


o 

>—* 


95 


594 


340 


254 


9 


94 


531 


310 


221 


H 


93 


468 


282 


186 


5 




, DEAFBLIND STUDENTS 




AGES OF 




Age 


Total 


Percentage of Population 




0-2 


25 


4.1% 






3-5 


84 


13.9% 






6-11 


200 


33% 






12-17 


192 


31.7% 






18-21 


94 


15.5% 






22 


10 


1.7% 







over 22 



0.2% 



27 



MOST COMMON ETIOLOGIES 



HEARING IMPAIRMENT 





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Etiology Number 

CHARGE 34 

Cornelia de Lange 7 

Dandy Walker 6 

Down Syndrome 14 

Goldenhar Syndrome 5 

Leber 's Congenital Amaurosis 7 

Usher I 14 

Usher II 13 

Congenital Rubella 1 

Congenital Toxoplasmosis 5 

Cytomegalovirus (CMV) 27 

Hydrocephaly 21 

Microcephaly 19 

Asphyxia 11 

Meningitis 26 

Severe Head Injury 1 4 

Stroke 6 

Tumors 9 

Complications of Prematurity 97 

VISUAL IMPAIRMENT 
Visual Status 



Hearing Status 



Number 



Number 



Vision better than 20/70 

in better eye with correction 48 
Low Vision (visual acuity of 20/70-20/200 

in better eye with correction) 74 
Legally Blind (visual acuity of 20/200 or less 

or field restriction of 20 degrees or less 298 

Light Perception Only 3 7 

Totally Blind 65 

Further Testing Needed 18 

Tested - Results Nonconclusive 32 
Not Tested and At Risk (Documented 

hearing loss and at risk for VI) 

Cortically Visually Impaired 1 65 

Diagnosed Progressive Loss 75 

Wears Glasses 233 



Very Mild (15-25 dB loss) 


13 


Mild (26-40 dB loss) 


45 


Moderate (41-55 dB loss) 


73 


Moderately Severe (56- 70 dB loss) 


81 


Severe (7 1-90 dB loss) 


97 


Profound (91 +dB loss) 


106 


Further Testing Needed 


36 


Tested - Results Nonconclusive 


55 


Not Tested and At Risk (Documented 




VI and at risk for hearing loss) 


94 


Central A uditory Processing Disorder 


65 


Diagnosed Progressive Loss 


41 


Uses Amplification 


274 



ADDITIONAL DISABILITIES 

Category 

Physical Impairments 
Cognitive Impairments 
Behavior Disorders 
Complex Health Needs 
Other Impairments 

LIVING SETTING 

Residence 



Number 

381 

399 

16 

253 

188 



Number 



Birth/Adoptive Family 

Extended Family 

Foster Family 

Group/Nursing Home, State/Private Facility 

Other or Not Reported 

HAS A DESIGNATED INTERVENER 
Status Number Percentage 

Yes 43 7.1% 



540 
19 

17 
23 

7 



No 
Unknown 



389 
174 



64.2% 
28.7% 



Here are some things the Census data tells us about identification of children and youth with deafblindness in Texas. 

After a peak of 775 students were identified in 1 998, the number has dropped every year, to 606 in 200 1 . While 
the decline may result in part from students being taken offthe Census after assessments conclusively ruled out vision 
and hearing losses, this may not always be the case. Of the 62 students deleted from this year's Census who continue 
in special education, 3 1 have documented visual impairments with hearing classifications of "further testing needed to 
determine hearing impairment," "tested - results nonconclusive," or "not tested and at risk." How many of these 
students were tested for a hearing loss before being removed? 

28 



The federal government projects the number of deafblind students in a geographic area using a formula of 2 to 3 students 
with deafblindness per 1 ,000 students receiving special education services. According to TEA, 482,427 students received 
special education services in the 1 999-2000 school year. If the federal projections are correct, there should be between 965 
and 1447 deafblind students in Texas. Where are they? 

There appears to be a significant, chronic undercount of 0-2 year olds. In response, representatives from several agencies 
will soon meet to discuss this issue. These will include the Texas Department of Health, Texas Commission for the Blind, 
Texas Education Agency, the Interagency Council on Early Childhood Intervention, the Three Low Incidence Disabilities 
Decentralized Function at Education Service Center Region 3, the Deafblind Census Project at Texas Tech University, and 
the Deafblind and VI Outreach Projects at Texas School for the Blind and Visually Impaired. 

Usher Syndrome (Type I and II), a leading cause of deafblindness, is estimated by some to occur in 3-6% of the 
congenitally deaf or hard of hearing population. 2785 of the 4508 students reported on the 1 999-2000 Texas State Survey 
ofDeaf and Hard of Hearing Students were bom deaf or hard ofhearing. (This number does not include congenitally deaf or 
hard ofhearing students who are in their local school districts and not being served by Regional Day School Programs for the 
Deaf.) 3% of 2785 is 83. There are currently only 27 students diagnosed with Usher Syndrome on the 2001 Texas 
Deafblind Census. 

More optimistically, the number of students who are deafblind from Congenital Rubella Syndrome (CRS) decreased from 
43 in 1 994 to 1 in 200 1 , a possible result ofboth better immunization and graduation from the educational system of older 
students with CRS. The increase of students diagnosed with CHARGE, from 1 2 in 1 993 to 34 in 200 1 , might indicate better 
identification and understanding of this syndrome. 



The Texas Education Agency's newly adopted expanded definition of deafblindness (effective March 6, 200 1 ) more 
closely reflects the federal definition, which qualifies a student to be counted on the Texas Deafblind Census. According to 
TEA, a student now qualifies as deafblind who "... has documented hearing and visual losses that, if considered individually, 
may not meet the requirements for auditory impairment or visual impairment, but the combination of such losses adversely 
affects the student's educational performance;" or ". . .has a documented medical diagnosis of a progressive medical condition 
that will result in concomitant hearing and visual losses that, without special education intervention, will adversely affect the 
student's educational performance." TEA's complete eligibility definition of deafblindness can be found on its website at 
<http^/www.tea.state.tx.us/rdes/tac/chaptei<)89/ch089aahtml>, provision §89. 1 040. Eligibility Criteria. 

In light of these changes, will the number of students counted on the Texas Deafblind Census increase? We'll let you know 
in 2002. Meanwhile, if you have questions about whether or not a child should be included on the Texas Deafblind Census, 
please contact the Deafblind Specialist at your Education Service Center (below), Dr. Roseanna Davidson at Texas Tech 
University, (806) 742-2334, or any of the Texas Deafblind Outreach Staff. Students can be added to the Census at any time. 



ESC Reg. 


Specialist(s) 


Phone 


Region 1 


Peter Graves 


(956) 984- 


Region 2 


Joyce West 


(361) 561 


Region 3 


Brian Jones 


(361)573- 


Region 4 


Susan Parker 


(713) 744- 


Region 5 


Dion Potter 


(409) 386- 


Region 6 


Nodya Thornton 


(409) 435- 


Region 7 


Ann Phillips 


(903) 984- 


Region 8 


Donna Clopton 


(903) 572- 


Region 9 


Tricia Lee 


(940) 322 


Region 10 


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29 



Look the World Straight in the Eye 

Terry Murphy, Executive Director, Texas Commission for the Blind 

The majority of the Commission's staffknows I'm big on inspirational quotes, so they appear from time to time in 
my mail. One such piece of paper recently caught my eye primarily because the sender had highlighted the name Helen 
Keller. From The Book of Positive Quotations by John Cook, Keller was quoted as saying: 

"Never bend your head. Hold it high. Look the world straight in the eye." 

Wow, those simple words exude so much confidence! I was hooked, so I spent some time over the next few days 
reacquainting my self with this impressive woman. 

I found that Keller was among "The 50 Most Famous People of the Century" in the December 1999 issue of 
Biography Magazine, which didn't surprise me. Although her life spanned two centuries (1 880-1968), she left an 
indelible mark on the century in which you readers and I were bom. Keller became the "poster person" for triumphant 
achievement in the face of physical disability in the 1 900s. Blind, deaf, and unable to speak as a result of an unidentified 
ailment contracted when she was 1 9 months old, Keller nonetheless went on to graduate cum laude from Radcliffe. 
She traveled the globe, wrote 14 books, and lectured. 

The person who helped Keller gain the confidence to "look the world straight in the eye" was her teacher, Annie 
Sullivan. Sullivan connected Helen to the world of possibilities at age 6. Once Keller realized from Sullivan that 
everything had a name, she was insatiable. Within six months, it is said, she had learned the manual alphabet and could 
read braille. One biography said that she went on to learn German, Latin, Greek, and French. All this says a lot about 
both the teacher and the student. 






I venture a guess that there are few adults today who haven't seen, heard, or read one or more versions of "The 
Miracle Worker," originally a play in which Sullivan and Keller were immortalized by William Gibson. The title itself 
says a lot about human nature. Back in the 1 880s, Sullivan's ability to help Helen understand a world of sight and 
sound without seeing or hearing was indeed thought to be a "miracle." 

An even bigger "miracle" in the early to mid- 1 900s was that Keller went on to use her understanding and education 
to earn a living by writing and lecturing. Unfortunately, this type of miracle mindset about successful and productive 
people with visual and hearing losses still prevails today. I tend to think that Keller and Sullivan would say that being 
brought together as student and teacher may indeed have been a miracle, but that Helen's successful "employment and 
independent living outcomes," as we would say in today's vocational rehabilitation field, were instead the result of a 
whole lot of hard work and perseverance on both their parts! 

I couldn't help wondering as I read more about Keller what she and Annie Sullivan would have to say about the 
Commission's "Texas Confidence Builders" service model if they were here today. After wandering through a few 
more of her words, I'm pretty sure they would say it's nothing new to them. Consider these: 

"We can do anything we want if we stick to it long enough." 

"One can never consent to creep when one feels an impulse to soar." 

And my favorite: 

"The world is moved not only by the mighty shoves of the heroes, but also by the aggregate of the tiny pushes of 
each honest worker." 

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I believe Sullivan thought of herself as an honest worker, not a hero. I think she would say that the way TCB 
provides services is similar to her approach in helping Helen - with tiny pushes of hope, optimism, determination, and 
honesty. From her background, Sullivan knew that if Keller could first learn alternative speech and communication 
techniques she would gain the confidence to tackle even more. I don't believe that Sullivan knew what Helen was fully 
capable of accomplishing. She just knew that with each step forward, a higher goal was possible. In those inevitable 
times when young Helen probably balked at something new or difficult, I can just see Sullivan pushing Helen gently 
forward even after adulthood because she knew Helen's self-confidence would grow as she learned and practiced 
new skills. 

TCB workers are sometimes criticized for not giving up when individuals set their feet in concrete and refuse to 
learn alternate skills from which to choose in varying situations. We can't force a person to put forth the effort, but we 
don't give up as easily as we once did. From experience we learned that an individual who concludes vocational 
rehabilitation or independent living services after choosing to learn a minimum of skills will generally return time and 
again to the agency for assistance. When so many of these returning individuals said they found they lacked the self- 
confidence to resolve problems for themselves, Texas Confidence Builders was born. 

We believe the "tiny pushes" Keller speaks about so eloquently are worth the potential criticism if we succeed in 
reaching individuals with the truth that living in a society primarily configured for sight and sound has enough barriers of 
its own without individuals limiting themselves. This last quote I came across pretty much sums up the lives of Sullivan 
and Keller, TCB workers, and the many individuals the Commission is challenging to be the best they can be. Helen 
Keller says: 

"I am only one; but I am still one. I cannot do everything, but still I can do something. I will not refuse to do the 
something I can do." 

A Vision for Texas 
Our Profession Determines Its Own Destiny 

By Dr. Phil Hatlen, Superintendent, Texas School for the Blind and Visually Impaired 

<PhilHatlen@tsbvi.edu> 

Editor s note: Dr. Hatlen gave this speech at the 2001 Texas Association of Education and Rehabilitation 
(TAER) Conference on April 20 th . 

In recent months, and most certainly in the coming months and years, a common topic for conversation among 
educators has been TCB's Texas Confidence Builders. My own reaction to this change in service delivery has taken 
several turns over the past few months. Let me suggest one way of looking at it. 

Unemployment and underemployment has been the primary issue among blind adults for as long as I have been in 2, 

this profession. Despite advances in rehabilitation and education services, despite technology advances, despite W 

changes in employer attitudes, the rate of unemployment has virtually remained the same for the past 50 years. TCB ^ 

has looked at that fact, considered what to do about it, and taken a dramatic move in the manner in which it serves its jj) 

customers. Whether you and I approve or not, the fact that TCB is willing to take risks, be bold, stretch the envelope, jv 
because nothing else has worked, is something that I, for one, can admire. 

< 

How are we, in education, doing these days? Very well, in many ways. H 

I think that local school districts, education service centers, and TSBVI have, over the years, developed a very 

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supportive, collaborative system that results in blind and visually impaired students receiving the best education in the 
most appropriate placement. "Appropriate" may change from time to time, and we have a flexible system in which that 
can happen. 

But we have our chronic problems, too. Regarding unemployment, we must own this issue, too. What are we 
doing about it? About service delivery in rural areas, are we certain that students are receiving all the direct instruction 
from a Teacher of the Visually Impaired (TVI) that they need? And what of teaching the expanded core curriculum? 
Our profession clearly tells us that it is as important as the regular core curriculum. But are all TVIs finding the time and 
inclination to teach such subjects as social skills, living skills, and career education? 

I'm not certain that you'll all agree with me, but from my perspective, we in education are as much in need of 
evaluating our efforts and considering some new directions as was TCB. 

I have a short list (five items) of concerns that I suggest to you are in need of immediate attention. And, like TCB, 
the solutions to some of these issues might very well require high-risk, bold efforts. My list consists of national issues, 
not unique to Texas. But my sincere hope is that professionals in Texas will take some of these concerns on as 
challenges to be overcome, and that once more Texas will take the lead in confronting issues and finding solutions. 

1. INSTRUCTION IN THE EXPANDED CORE CURRICULUM 

The concept of an expanded core curriculum for blind and visually impaired learners had its origin in schools for the 
blind a century ago. It took a wrong turn for awhile in the middle of the 20 th century when we became so obsessed with 
inclusion that we weren't willing to admit that these students had unique needs, that vision loss in and of itself created 
learning needs. 

This topic went through several name changes. It was first referred to as the "specialized needs of visually impaired 
students." Soon we were using the term "unique needs," the "disability-specific needs." Finally, with the realization 
that all of education was moving toward the concept of "core curriculum," the term "expanded core curriculum" was 
used and adopted. 

The National Agenda movement ran